VOL-13
IN THIS ISSUE:
SOCIAL VIOLENCE 1 / BRIDGE MAGAZINE
Step. Back. Think. One punch can result in shattered lives
BRIDGE VOLUME 12 – September 2013
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ISSN 1448-9856 General Editor: Contributing editors: National Development Manager:
Barry Morris Clare Humphries Lisa Cox Rick Bowie Gerowyn Hansone
Investing in youth
ABI changing the youth of tomorrow
Glen Farlow
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Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: info@synapse.org.au W: http://synapse.org.au
Bridge is produced by Synapse (trading name for the Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.
VISUAL DIFFICULTIES: Visit www.synapse.org.au and view the free online version which can be expanded on screen.
DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. Synapse will not be held responsible for any injuries or damages that arise from following the information provided. Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse.
Wheel the Spiel
Changing young people’s view on ABI?
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INDEX
03 What is a traumatic brain injury?
Two major types of traumatic brain injury
04 Breaking the Silence
Brain Injury as a result of domestic violence
05 Life choices
A few drinks, what could go wrong?
07 Step. Back. Think.
One punch can result in shattered lives
09 Domestic violence after brain injury
Minimising violent behaviour following ABI
11 Investing in youth
ABI changing the youth of tomorrow
13 Traumatic brain injury - physical problems Management of common issues
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14 Respite & residential care
Help with taking a well earned break
15 Wheel the Spiel
Changing young people’s view on ABI
17 Managing anger
Strategies to minimise violent outbursts
19 The lowdown on motorbike helmets
Make sure your brain bucket does the job
21 Giving feedback about behaviour
Clear feedback can make a big difference
23 Anxiety disorders & brain injury
Don’t let panic attacks get you into a flap
25 Why did this happen?
Making sense of tragic events
27 Queensland Victim Assist
Support for victims of violent crime
28 What a beautiful noise
Dealing with sensory overload
29 Happiness
How to put a smile on your dial!
30 Improving self-confidence
A self-esteem boost after a brain injury
bridging THE GAP Social violence & brain injury We have all grown up with action movies and superheroes, cartoons and comedians, all seemingly impervious to injury. We cheer for the main protagonist as they get brutalised, thrashed and pommelled in every sense of the word, all in the name of saving the pretty girl… albeit the entire world from destruction. No matter how much they are battered and bruised, the hero gets up, shakes the proverbial cobwebs from their head, and continues on with no real permanent damage done. It’s fiction of course, but one can’t help to see the similarities between the way our modern heroes are presented in movies, and the perception by the general public of “injury” or “disability” in the wider community. Namely, if you can’t see it, it doesn’t exist. Many will be familiar with the “One Punch Can Kill” campaign by the Queensland government. The question we want to ask
Jennifer Cullen, CEO of Synapse
though, is what happens when One Punch Doesn’t Kill? Sensationalism reigns supreme when it comes to news coverage, so it is little wonder that most headlines focus around death and mortality. For every death from a king hit however, there are many more who receive a disability, most likely a Brain Injury. These injuries are permanent; destroying young lives, disconnecting families, with many of these individuals being placed in nursing homes, hospitals and prisons due to the lack of support options available. The effect of inappropriate placement on clients is thought to include increased incidence of complex behaviours, deterioration of general mental health and well-being and heightened risk of readmission. They may experience social dislocation and exclusion and fail to receive appropriate services and supports to live meaningful lives in the community. While the humanitarian cost is immeasurable,
the economic cost is also significant, with some disability packages ranging into the hundreds of thousands of dollars. Then of course, there are the criminal implications for the perpetrator. With current laws pending review in the near future, whether or not someone actually meant to harm another person during an altercation, may not stop them being charged and convicted of murder. Physical and social violence can happen anywhere, from a local bar to your own home. Whether it is the silly season, or just a regular Friday night catching up with friends, don’t let a split second decision ruin your life or someone else’s. Step, Back, Think. Understand the risk, look after each other, and make sure everyone gets home safely. Jennifer Cullen CEO of Synapse
AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS QLD Synapse Tel: 1800 673 074 Email: info@synapse.org.au Web: synapse.org.au AUS
VIC
TAS Brain Injury Australia Tel: 1800 272 461 Email: admin@braininjuryaustralia.org.au Web: www.braininjuryaustralia.org.au
NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: mail@biansw.org.au Web: www.biansw.org.au
SA
BrainLink Services Tel: 1800 677 579 Email: admin@brainlink.org.au Web: www.brainlink.org.au
WA Headwest Tel: 1800 626 370 Email: admin@headwest.asn.au Web: www.headwest.asn.au
Brain Injury Association of Tasmania Tel: 03 6278 7299 Email: enquiries@biat.org.au Web: www.biat.org.au
NT:
Somerville Tel: 1800 007 007 Email: scs@somerville.org.au Web: www.somerville.org.au
Brain Injury Network of South Australia Tel: 08 8217 7600 Email: info@binsa.org Web: www.binsa.org
ACT
National Brain Injury Foundation Tel: 02 6288 1117 Email: manager@nbif.org.au Web: www.nbif.org.au 2 / BRIDGE MAGAZINE
What is a traumatic brain injury? Safety first with new cycling laws The Queensland Government should seize the chance to lead the nation with a range of strong new laws to protect cyclists, say campaigners who want to prevent injuries on the roads. Commenting on the 68 recommendations made by a QLD Parliamentary Inquiry, law firm Maurice Blackburn, Safe Cycling Australia (QLD) and Synapse (formerly the Brain Injury Association Queensland) welcomed the recommendations, but warned against watering down laws about helmets. The report “A New Direction for Cycling in QLD” by the Transport, Housing and Local Government Committee was tabled in the QLD Parliament today. principal and road safety advocate said many of the recommendations, if adopted by the Newman Government, had the potential to save lives and cut injury rates. “We support the majority of the recommendations to protect cyclists, in particular the mandatory safe passing distances and on-the-spot fines for dooring” said Andrew McKenzie from Maurice Blackburn. “ However,we are concerned about relaxing helmet laws which could send the wrong message about helmet use.” Glen Farlow, national development manager for Synapse said cyclists were particularly vulnerable to brain injury: “I have heard comments about the report already from experienced riders not wearing helmets and never having an accident. Through my work at Synapse, I also hear every day from people with a permanent brain injury who never thought it would happen to them. It only takes a split second for a life-changing accident to occur; anything we can do as a community to prevent these injuries should be a priority. Read the report online at: http://www. parliament.qld.gov.au/documents/tableOffice/ TabledPapers/2013/5413T4163.pdf
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A traumatic brain injury is an injury to the brain caused by something outside the body. It is different from a stroke, which is caused by something inside the body: weak blood vessels, blood clots, etc. There are many things that can cause a traumatic brain injury (TBI). Some of them are: a car accident; a hit to the head with a blunt object, bottle, or other object; hitting the head during a fall or sporting incident; or a gunshot wound to the head. TWO TYPES OF TBI Closed head injuries happen when the brain is damaged without opening of the skull. Think of the brain as being like jelly in a container. If you move the container quickly then suddenly stop it, the jelly will bounce off the sides of the container. In the same way, the brain bounces off the skull when the head stops suddenly after being in motion. Damage to the brain is caused by bruising and bleeding within the brain, tearing and stretching of nerve cells, swelling of the brain, and the building up of extra fluid. Penetrating (open) head injuries happen when a sharp object goes through the skull and enters the brain tissue. Examples of objects that could cause a penetrating brain injury are a bullet, arrow or knife. In these cases, the most
damage occurs to the part of the brain that the object goes through. But damage to other parts of the brain can occur because of bleeding and swelling. The brain controls most of our abilities, including memory, speech, vision, movements, making decisions, and our ability to get things organized and done. Our brains also affect our emotions, such as whether we feel sad or happy, or whether we’re easy-going or irritable. The brain is divided into many parts, and each part controls different abilities and behaviors. For example, one part may be important for talking and another part may be important for understanding other people’s speech. Brain injury can lead to different problems, depending on the parts of the brain that are damaged. Each person’s brain is like everyone else’s in some important ways, but each brain is also unique. Because of this, there are some problems that are the same for all people with brain injury, and some that are different. This excerpt from “Picking up the pieces after TBI: a guide for family members” is reproduced with permission of Angelle M. Sander, Ph.D., with Baylor College of Medicine and TIRR Memorial Hermann.
Domestic violence & brain injuries Despite increasing publicity of domestic violence there is still little public awareness of just how often victims of domestic violence acquire a brain injury. Brain Injury Australia has written a separate policy paper on the high rates of inflicted traumatic brain injury (ITBI) in children — the leading cause of death and disability the result of physical abuse. 163 infant males (aged less than one year old) and 132 infant females were hospitalised due to assault in Australia during 2006-20071. Of the 261 children admitted to New South Wales’ Brain Injury Rehabilitation Program during the same year, seven per cent had acquired their brain injury due to assaults resulting from domestic violence. VIOLENCE AGAINST WOMEN Historically many cultures accepted men ‘disciplining’ their wives. Although this was made illegal in most western countries in the 19th century, it was only in the 1990s that substantial effort was put into enforcing laws that aimed to prevent domestic violence.
So what is violence against women? The United Nations Declaration on the Elimination of Violence against Women defines violence against women as “any act of gender-based violence that results in, or is likely to result in, physical, sexual or psychological harm or suffering to women including threats of such acts, coercion or arbitrary deprivations of liberty, whether occurring in public or private life”. According to White Ribbon, violence against women is violence directed against a woman because she is a woman or that affects a woman, disproportionately. This may include assault, rape, harassment, murder, lesbian bashing, elder abuse, genital mutilation, enforced prostitution, enforced sterilisation, enforced abortion, killing of unwanted female babies, enforced motherhood and economic violence2. THE SHOCKING NUMBERS White Ribbon is a male-led movement to stop violence against women. They recently updated research conducted by Dr Michael Flood to
reveal some truly shocking statistics. • Up to half of Australian women will experience physical or sexual violence by a man at some point in their lives3. • One woman is killed every week in Australia by a current or former partner4. • Over one year, between five and ten per cent of Australian women experienced at least one incident of physical and/or sexual violence by a man3. 1 Australian hospital statistics 2006–07, Australian Institute of Health and Welfare, Canberra, 2008 2 http://www.whiteribbon.org.au/uploads/media/updated_ factsheets Nov_13/Factsheet_5_Facts_and_figures.pdf 3 The Australian component of the International Violence Against Women Survey, conducted by Australian Institute of Criminology (a national survey of 6,677 women in Australia aged 18-69) 4 Homicide in Australia: 2008–09 and 2009-10 National Homicide Monitoring Program annual report conducted by the Australian Institute of Criminology (2013)
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Life choices A few drinks on a Friday night, what could go wrong? Brent shares his story with young Australians on how life choices can change your life forever.
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I have been to hospital three times because of binge drinking — I call it my three warnings. My first warning happened riding home drunk from a 21st birthday party. I got smart with some guys in the McDonald’s car park and they followed me home then bashed me. One of them kicked my three front teeth out, and they left me in my front yard. In the morning I went to the dentist and he couldn’t save the teeth because it was too late. For eight years, I had to wear a plate fitted with artificial teeth. In 2005, I got teeth implants; these were $5000 per tooth so my first warning cost me $15,000. My second warning was when I was a university student and went to the snowfields. On the last night we went out drinking and I thought I was funny – pushing other people’s snowboards down the hill. A guy in the pub hit me over the head with a snow board. I was found unconscious in the snow and flown to the hospital. I was diagnosed as having concussion (a mild form of brain injury). The words “brain injury” weren’t mentioned at all and I was told to go home and rest. In September 2006, I started drinking at a music event called Parklife. Afterwards I continued drinking at a few nightclubs and ended up being rejected from the last nightclub. I went around the back and tried to climb in. I fell from a second level balcony — I was too drunk to remember if I simply fell, or possibly got smart with someone and they pushed me off. I broke 17 bones, and lost use of the left side of my body due to a brain bleed. The fall left me in a coma for seven and a half weeks. Short-term memory Nowadays my short-term memory isn’t great. I lost my wallet one morning and spent two hours looking for it. I asked my dad for help and he told me my shorts were on back to front. My wallet was in the other pocket! I retrained myself to remember things by using the diary on my iPhone, and reminder notes for brushing my teeth in the morning, putting on my walk-aide for my weak leg, or turning off the heater at night. I exercise my memory by counting laps as I walk around the oval, and two hours of daily “brain training” with a computer game called Spider Solitaire.
RESPONSIBLE DRINKING • The law against drinking until you are 18 isn’t just to stop you having fun. As a teenager your body still isn’t fully ready to cope with alcohol and clear it from your system well. • Always keep an eye on your drink so nobody can slip drugs into it. Find out what a standard drink is, and count how many you have. Have a glass of water in between each drink to stay hydrated. • Keep an eye out for each other, in case a mate is about to pass out or gets aggressive with others. • Don’t drink and drive. Have a designated driver who doesn’t drink, or have enough money for a cab. • Don’t mix alcohol with other drugs. There can be nasty interactions with some of these. If you are on any prescription medications make sure they don’t interact badly with alcohol.
Other cognitive problems Short-term memory issues were only the start. I had bad fatigue for the first three years. It was very important to take an afternoon nap (which I called a power nap) for 30 minutes to recharge my mind. I was told it was a good tool for my brain to recover from injury. After the three years of fatigue I developed sleep problems where I would wake up really early and found I couldn’t sleep in. I would tell people “I’m a morning person and I love life so much I’m excited to start each day”. When I’m writing or talking sometimes I don’t know the right word to write or say so I pause and try to think of it. I sometimes laugh at inappropriate times – once I was at a funeral and I was sad but started laughing. Sometimes I laugh at someone even though they aren’t doing or saying anything funny. I can’t cry with tears when I’m upset anymore. Physical rehabilitation I think my physical gains have been most impressive. I eventually regained use of the left half of my body a year later, but I still have weakness in my left leg – I had to use a wheelchair for several years. I must thank Tim at 2 Good Personal Training for convincing me I could recover more than I thought possible. Eventually I started running and got to two km in 25 minutes, for which I should thank Gavin Williams – a physio at the Epworth rehabilitation hospital in Melbourne. I was then told by another physio I had to stop running so I could learn how to walk properly, which has taken me three years. I have started to jog again — I say jog because it is so slow and the
OTHER DRUGS & HARM MINIMISATION The Australian government and most welfare services have adopted a policy of harm minimisation – it doesn’t condone drug use but recognises the need for reliable information to reduce potential harms. • If you do use illegal drugs, get to know your drug, the signs of overdose, and how to treat an overdose. • Try a small amount first – it may be stronger than normal, or cut with other drugs or fillers. • Don’t mix with other drugs or alcohol, and always keep an eye out for each other when high. • Taking drugs by mouth is safest, injecting is the most risky – if you must inject drugs then read up on safer injecting tips, always use a new needle, wash your hands first, and never inject alone.
word run doesn’t do it justice. Learning to live independently again In 2009 I went to live in the Transitional Living Centre, which is run by the Epworth rehabilitation hospital to teach people how to live independently. They taught me things like budgeting and how to cook five easy meals like spaghetti bolognaise, stir fry and pasta bake. I lived in Preston for two and a half years with a good friend who had a brain injury too. This worked out really well as we helped each other out with our weaknesses. But one night I came home to find him passed away in the bathroom — his heart had stopped. At his funeral it was the first time in six years that I had tears and could cry properly. But I’m a big believer in ‘everything happens for a reason’. Afterwards I found a single new apartment in North Melbourne and I have been living on my own for the last year. I currently sit on the board for ‘Independent Disability Service’ as I try to be an advocate for people with disabilities. Where to from here? I am now a motivational speaker. I started this work in July 2011 with six talks, then 31 talks in 2012, and this year I have booked 33 talks so far. I speak to young people about life choices, using my life as example of how our choices can lead to a brain injury. My future quests or goals are: • Make a full recovery despite the predictions from my doctors! • More left arm movement • Be able to keep up with others as we walk • Continue to inspire others through my weekly talks about life choices. I will end this story by saying that everyone who has an Acquired Brain Injury is different — we may be affected in similar ways but a brain injury causes many different effects. But we can all make life choices to avoid acquiring a brain injury, or make the most of our life if we already have a brain injury. If your school or organisation would like to enquire about engaging Brent as a motivational speaker, contact Synapse by emailing info@synapse.org.au or calling 07 3137 7400. 6 / BRIDGE MAGAZINE
If Dave could say one thing, it would be “Just think... could this punch end this person’s life?”
Step. Back. Think. Step Back Think is a group trying to prevent one punch resulting in shattered lives forever Dave Mitchell was a typical 19 year old guy. He had just started his apprenticeship in carpentry, loved playing footy, and hanging out with his mates. On what seemed like a regular night out with his friends, Dave’s mate fell into a dispute with another guy who told him to “come outside”. Dave followed his mate out of the pub to “play the peacemaker” and try to diffuse the EFFECTS OF ALCOHOL ON THE BRAIN
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situation. He was then king hit, fell to the ground and had his head stomped on, not once but three times. Unconscious, Dave was dragged across the road to safety by his mates who then called an ambulance. Soon after Dave arriving in hospital, Dave’s family received a call from the hospital asking them to come in as he was unlikely to make it through the night. Miraculously, Dave pulled through but when
he woke surrounded by his family, he had security remove them as he did not recognise them. His injuries were so severe that it took Dave over a year to physically recover from his attempts to break up a fight. Dave describes his rehabilitation like “being born again” – he had to learn how to walk, read, cook, make his bed, and had to get his licence back. Had this tragic event not happened, Dave
might be qualified as a carpenter and might still be playing footy. He misses this interaction with his mates. Dave relives that moment every day, replaying it in his mind, but feels lucky to be alive today. If Dave could say one thing to people, he would say “just think. . . could this punch end this person’s life, and what will happen to you? Is it worth it? Is that going to get the matter resolved, over a drink being spilled, or a girl being pushed? Will the punch actually resolve what it’s all about?” Dave lost two years of his life, and he’s one of the lucky ones. His attacker is serving six years in prison. Both young men offer a tragic example of how easily young lives can be derailed by street violence. If you want to meet Dave and see his full story, visit: http://www. youtube.com/watch?v=_Om7mPkcNdY HOW TO STEP BACK & THINK So, what are the steps you can take to reduce the likelihood of getting tangled up in a situation which could turn violent? First, it is important to recognise the warnings signs within yourself. As humans, our bodies give us a variety of signals that indicate that we are getting angry or “wound up” before we become physically violent. Similarly, it becomes equally important to recognise the warning signals in other people too. Here are some tips on what to look out for. RECOGNISE THE WARNING SIGNS Recognise the warning signs in yourself Physical signs: - Increased heart rate - Sweaty palms, tensing of muscles - Feeling hot in the neck and face Emotional signs: - Feeling irritated or anxious - Losing your sense of humour - Feeling like striking out verbally or physically. Recognise the warning signs in others Their body language: - Red face and neck - Tensed muscles (clenched fist/jaw) - Hostility, glaring looks - Encroaching on your personal space. Verbal aggression comes first! In almost every case, aggressive tone, shouting, or yelling will precede physical aggression. Recognise these as warning signs and then act. THEN WHAT? Remove yourself from the situation by walking away, distracting yourself elsewhere, or suggest to your friends that you change venues. Act early! If you leave it too late, the situation will only escalate and get out of hand. What if someone else becomes aggressive toward you?: • As long as they are in an aggressive and aroused state they are not thinking clearly, so
trying to diffuse the situation with words is only likely to provoke them more • Step back, do not react/challenge/provoke/ argue because you are only adding fuel to the fire • Use friendly and open body language (e.g. hands up, step back) rather than provocative or defensive gestures (e.g. crossed arms, fist in air). WHAT IF MY FRIEND IS GETTING INTO A FIGHT? Flip the tradition of “got your back mentality” on its head, and instead of flying the flag, you can make sure you protect your mates by keeping them away or distracting them from a situation that could explode into a punch on. Pull them away from the situation and suggest you move on to a new venue/new area, or calm them down by taking them outside for a walk or for something to eat. JUST THINK! Will fighting this person resolve the issue? What if you or he is seriously injured? You could face life with a brain injury, or time in prison. Having a criminal record may stop you from getting the job you desire, or entering some countries, is it worth it? Will you even remember what the argument was about in a weeks’ time? Our brains are unable to think rationally when we are in this state or ‘emotionally charged’ so your thoughts and feelings are likely to be exaggerated. As long as you or another person are in this aroused state, no words will resolve this issue. ALCOHOL FUELS VIOLENCE, SO DRINK RESPONSIBLY Alcohol exacerbates our feelings of aggression when we are out, so whilst it is okay to have a few drinks socially, drinking in excess is more likely to result in a violent situation. When we drink alcohol, we are effectively altering our mental state. We all respond very differently to alcohol; some become happy, some sad, some silly . . . and some aggressive. Most importantly, alcohol disengages the rational part of our brain that helps us make thoughtful and well-guided decisions, and our “emotional brain” takes over. This is why many people say or do things they might not normally say when they are sober.
Step Back Think was formed in the wake of horrific injuries sustained by James Macready-Bryan in 2006. James – or “MB” as he was known to his mates – was assaulted in the CBD on his 20th birthday. A single punch knocked MB to the ground where his head smashed against the pavement, resulting in catastrophic brain damage from which he will never recover. MB remains in a persistent vegetative state, stuck permanently in a wheelchair, and has limited ability to communicate with his loved ones. In the years since, countless more young men have sustained horrific injuries from assault, and others have lost their lives. We’re a team of students and professionals, doers and thinkers, young and . . . less young (but not quite old). The sole mission of Step Back Think is to educate people on the catastrophic consequences one punch can have. One punch was the catalyst for the formation of SBT, one punch was all it took to bring the issue of street violence abruptly to our attention, and one punch turned our mate into one of those news stories that you would have once heard and thought “that will never happen to me”. We believe the logical flow on effect of increased awareness will be fewer instances of derailed lives and tragic deaths, and that the more people that know how one punch could lead to serious brain injury or death like MB’s, maybe they would think twice about throwing it. We hope to be the nagging voice in everyone’s head when they are shaping up to hit someone that says “if this guy’s head hits the pavement, he could die and I could go to prison for life . . . all over spilt beer? It’s hardly worth it”. If you would like more information about the organisation or want to get involved, please go onto our website at stepbackthink.org and send us an email, we would love to hear from you!
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Domestic violence after brain injury Challenging behaviours after a brain injury can lead to domestic violence within a family It is possible that people with a brain injury may develop behaviours that lead to domestic violence. Many of us were raised to believe that we should stand by our family members no matter what. This stance is put to the test when threatened or actual violence occurs. Choosing to ignore the behaviour can mean your family member does not get constructive feedback on the negative behaviour, which can lead to a cycle of violence. In some cases, a person with a brain injury can be the picture of politeness when speaking to the rehabilitation nurse or a visitor, but be verbally and physically aggressive in the home environment. Once you see that they can act appropriately, it is more difficult to 9 / BRIDGE MAGAZINE
accept abusive behaviour at home on a regular basis. There are different explanations for this, which may not make challenging behaviour or aggression easier to tolerate, but they do provide a framework for understanding. Reasons for violent behaviour We all tend to let our hair down with family, as opposed to strangers or acquaintances. Of course, after a brain injury a person’s interpretation of letting hair down may be well beyond what most would consider acceptable, particularly if their self-awareness has been affected. They may justify their violence by saying that others provoked them, not realising that the brain injury has increased their sensitivity to stress and decreased their ability to handle it.
The frontal lobe is often damaged in brain injury. This area of the brain is involved in reasoning, problem-solving and controlling our more basic instincts such as anger. An individual who has sustained a brain injury has often lost these skills and therefore may have trouble controlling anger and violent outbursts. In many cases, a brain injury affects social judgement and the ability to know what is appropriate behaviour in various situations. Overall, a family’s patience can be quite worn after months of care and support. What makes matters worse is that the brain injured person may have little insight into the impact of their behaviours on the family. Examples include: • An adolescent spits in his mother’s face when he is not allowed to drive the car
Injury Association should be able to refer you to suitable support in this area. Unfortunately there will be cases where a lack of self-awareness means that an individual cannot relearn these skills. In these cases, it is necessary to develop a behaviour management program to minimise or prevent violent outbursts. When self-awareness is an issue, don’t continually bring up reminders of past violent behaviour. This will only serve to upset them and will not be conducive to change. There should be ‘family rules’ of which the person is aware prior to coming home. If anger or violence could be issues it is much better to discuss and work these out with the person before they return home. Do not take the abuse personally – this will only interfere with your ability to implement effective behaviour management. However, it pays to look at what the triggers were in each case and see if these can be minimised. Treat each occurrence as an isolated incident. A person with a brain injury may not remember their abusive outburst yesterday. Try to find out what the triggers were and minimise these in future where possible. Keep in contact with your support systems – you need to have trusted people you can talk to. Have a family meeting where all members are trained to manage behavioural issues in a consistent manner. Join a support group in your area so that you can find out how others have handled similar issues. Do not allow yourself to live in a state of fear. If problems persist, you may need to consider professional support with a program geared at behavioural management. Your local Brain Injury Association should be able to refer you to specialists in this area.
• Grandfather screams constantly at a niece he adored prior to his accident • A wife constantly accuses her husband of having an affair • A husband hits his wife when she doesn’t agree with him on an issue. Management techniques Do not allow a pattern of family abuse to become established in your home. You will need to make some allowances for changes brought on by a brain injury, but continued abuse and violence are not acceptable. When the person still retains self-awareness, they will need to relearn communications skills, anger management, and relaxation techniques to manage their anger and frustration. Your Brain
The last resort Finally, a brain injury can never be an excuse for domestic violence. If all fails after professional support, then you may need to begin looking at other options. In some cases the person with a brain injury may continue to regularly assault their partner despite professional support and a behaviour management program. Sometimes the only option left is to leave and take out restraining orders to prevent further violence after leaving. The Brain Injury Association in your State should be able to link you with agencies who can advise you on legalities, emergency accommodation and restraining orders, and also help to provide supports for the individual with the brain injury. This is one of many fact sheets available on the Synapse website. It is also available in our free publication “Acquired Brain Injury: The Facts”. Go to www.synapse.org.au for more information.
1.6 million Aussies with ABI Over one in 12 Australians are affected by some form of Acquired Brain Injury. (World Health Organization, 2007). Acquired Brain Injury (ABI) is a complex spectrum disorder that refers to any type of (organic) damage to the brain or neurological disruption occurring after birth. The Diagnostic and Statistical Manual of Mental Disorders 5 (DSM5) has recently moved to the term ‘Neurocognitive Disorder’ as a descriptor for this condition which is inclusive of ‘Acquired Brain Injury’, with causes including (but not limited to) trauma, vascular disease, Alzheimer’s disease, Parkinson’s disease and infections. The term Neurocognitive Disorder, however, provides a diagnosis for people experiencing cognitive symptoms alone, without memory or physical impairments. This means that many individuals who are not currently receiving recognition or services (due to the lack of memory or physical impairments) will have this opportunity for understanding. Synapse sends a message of support to all those adults and children living with a Neurocognitive Disorder: • Because the “one punch didn’t kill” • As a result of falls, motor cycle and motor vehicle accidents, and other trauma • As a result of degenerative diseases, brain tumours, Dementia, Parkinson’s, Huntington’s, Multiple Sclerosis, Cerebral Palsy and other brain illnesses • As a result of stroke and other cardiovascular diseases • As a result of alcohol, drug abuse, concussion or repeated knocks to the head from sports. Through the work of Brain Injury Associations across Australia, we know that the current statistics don’t mirror society. They grossly underestimate the real numbers, and many people with a Neurocognitive Disorder are either misdiagnosed or undiagnosed. Unfortunately it is often the most vulnerable people in the community affected, but never diagnosed, including: • Indigenous Australians • Homeless people • Survivors of domestic violence • Soldiers who survive the ravages of war • People in the criminal justice system. Around twice as many people are diagnosed each year with ABI compared with those for breast cancer and yet very few people know about ABI (AIHW, 2010). This is an extract from Synapse’s 2013 Annual Report. You download the full report from the Publications Archive at http://synapse.org.au
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Investing in Youth How providing information on Acquired Brain Injury can improve the future for youth at risk. Synapse’s work with Youth Justice
Justice Conferencing team in 2010 to attend
Conferencing has been reshaping attitudes
Youth Justice Conferences as a community
and awareness of Acquired Brain Injury.
representative. Synapse has been a part of
Emphasised are the risks and the consequences
Youth Justice Conferences for three years now
to young people who offend (or are at risk of
- informing young people about their choices.
further offending) and the victims of the
This involves speaking with young people
offences. The outcomes observed have been
about the possible outcomes, impacts and
extremely successful, further strengthening the
consequences of their actions during an offence.
argument that we need to fund and implement
This sort of information is particularly
more Youth Justice Conferencing to the benefit
important given the well documented spike
of the offender, the victim and the wider
in the incidence of Acquired Brain Injuries
community – including government and the
among young men and women (aged around
justice system.
16-25). This increase is thought to be due to
Synapse was approached by the Youth 11 / B R I D G E M A G A Z I N E
greater risk-taking behaviours - such as driving
recklessly, drinking excessively, and assault. Clare Humphries from Synapse has attended many Youth Justice Conferences and says, “We believe this sort of intervention is vital to ensuring positive future outcomes in what is often a negative situation”. The Conferencing Process Youth Justice Conferencing is based on the principles of restorative Justice. Restorative justice focuses on the young person taking responsibility for their actions. They hear how the offence has impacted on the victim directly from the victim or representative. Youth Justice Conferences place crime back
in the community where it occurred. This enables the young offender, and those who have been most affected by the offence, to have their say and decide on an outcome that is meaningful to them. Youth Justice identify the key stakeholders who will provide support for the victim/s pre and post conference and combine them with community representatives (such as synapse) to provide a community perspective and an educational component for all who participate. In attendance is the offender, their family, the victim (if they wish to), and the police officer – to provide a wellrounded perspective. Ultimately, the conference works towards an agreement which is negotiated between the offender and victim and agreed to by all participants. Ms Humphries explained Synapse’s role in Youth Justice Conferencing saying that “We essentially represent ‘what could have happened’ and how assaults, motor vehicle offences, drugs and alcohol can often end in Acquired Brain Injuries”. When the victim attends The victim of an offence referred to a youth justice conference has a legislated right to attend the conference. Victims are contacted and invited to attend a conference however they are not under any obligation to attend. Victims who do attend are often empowered by the process through telling their story, feeling heard, being validated, supported, and consulted about the outcome. It’s also an opportunity for the victim to have their questions answered and their fears allayed. Whilst the victim may have felt powerless during the time of the offence, the conference provides the victim a place to take their power back. For the offender, it is not an easy task to sit opposite the person they have harmed. At times, it is even more challenging for offenders
to hear how their actions have harmed someone in ways they had never considered before. Generally, once a victim feels heard and the offender demonstrates a level of understanding, empathy and remorse they look toward the future by offering suggestions that may help the offender move forward. Funding our future Synapse has seen the positive outcomes from Youth Justice Conferencing for victims, offenders, families, and communities and hope that their continued attendance will provide ‘real-life’ examples of how actions have consequences...the ripple effect. The undeniable success of past Youth Justice Conferencing is strong evidence that the government and legal system must continue to support programs like these. Victims leave feeling empowered whilst offenders leave with greater awareness and understanding towards violence, sharing this knowledge with their peers. Of course it would be wonderful if there was no need for Youth Justice Conferencing but this is the real world where hundreds of young people unnecessarily acquire a Brain Injury each year and many more pass through the criminal justice system. Remembering that not only is the offender a young person but quite often, the victim is as well. Strengthening
our
young
peoples’
understanding of Acquired Brain Injuries is one way Synapse can positively change outcomes for the future by producing fewer victims and less young people making poor decisions that may affect them and their victims for the rest if their lives. For more information on Youth Justice Conferencing, please contact Synapse via info@ synapse.org.au or +61 7 3137 7400.
TAKING A CLOSER LOOK – THE CASE STUDY Synapse’s Community Response Team explained their role and shared some feedback from young people.
“Each presentation is tailored to facilitate understanding and we try to speak on the level of the young people, so they are open to the information we share. This is often the first time these young people hear about brain injuries and the harm they can cause to others and themselves. One of the young people who attended a conference asked why they weren’t taught about Brain Injury in schools. This young sixteen year old had been sent to Youth Justice Conferencing as she had assaulted one of her fellow classmates at school. She went on to explain that speaking with Synapse, and understanding how Acquired Brain Injury can occur, would change the way she approached others in the future. This is the theme we hear from many youths on completion of their conferences. They are often shocked, ashamed and appalled at their own behaviour, but empowered to change this for the future. This change of attitude in the offender often leads to a sense of release for the victim also.”
When one punch doesn’t kill... A leading Australian disability organisation is asking for a review of penalties for offenders when their one punch doesn’t kill and leaves the victim with a disabling Brain Injury. For over 30 years Synapse has been providing support to the over 1.6 million Australians affected by some form of Acquired Brain Injury (ABI). Unfortunately, this has included victims of alcohol fuelled violence. “For every punch that kills there are even more that don’t but leave people to live on with debilitating brain damage”, says Synapse CEO Jennifer Cullen. And while the death of a loved one is immeasurably devastating, the costs of living with an ABI are also high – to loved ones, tax payers and the government. “While a financial perspective is certainly not the first way to look at this problem it’s just another reason why we encourage the government and our legal system to review current penalties”, said Glen Farlow, Synapse National Development Manager. In recent weeks, the penalty for offenders has come under close scrutiny following the 4-year manslaughter sentence handed down to Kieran Loveridge – the person responsible for punching and subsequently killing 18-year-old Thomas Kelly in an unprovoked, alcohol fuelled attack last year. But while the debate continues around sentencing when one punch does kill, Synapse is asking that we also review laws and consequences for offenders when one punch doesn’t kill. “The message that one punch can kill is a powerful truth”, says Mr Farlow. “But we’re asking everyone to think about the costs to individuals, families and to the community when one punch doesn’t kill”, he added. Synapse works to improve the quality of life for people affected by Brain Injury and Brain Disorders and to reconnect them with the community. Causes can include Stroke, Dementia, Parkinson’s disease, brain tumors, Multiple Sclerosis, Post Traumatic Stress Disorder (PTSD), or trauma to the head from sports concussion, car accidents or a king-hit.
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Physical problems after a traumatic brain injury Physical problems and what you can do to help
A traumatic brain injury interferes with the way the brain normally works. The nerve cells in the brain can no longer send information to each other the way they normally do. This causes changes in the person’s behaviour and abilities. The injury may cause different problems, depending upon the parts of the brain that were most damaged. There are three general types of problems that can happen after a brain injury: • physical problems • problems with thinking abilities • changes in feelings and behaviours. Most people have some problems in all three areas, but the exact types of problems will differ. The degree of recovery, and how fast it occurs, will also differ in each case. Some people will never be able to return to all the activities they did before injury, but they may return to some. This article covers common physical problems after a brain injury. Keep in mind that your loved one may or may not have each of these problems – everyone is different. Below each list of problems we suggest some things that may help you and your loved one to manage the problems. Again, not all things will work for everyone. We can help you to choose the ones that are right for you and your loved one.
What can you do about movement problems? • Accept that your family member will take longer to walk and to move around. Allow extra time to get to appointments. • Ask the doctor if your family member can have a referral for a physiotherapist, who can help with improving balance and movement. • Ask your physiotherapist about equipment that can help, such as a walker or cane. • Place things within easy reach. • Help them (only when asked) when they are picking up small objects, such as coins, pencils, etc. Ask your physiotherapist if there is some equipment that can help with this.
Movement problems • Moves much more slowly • Difficulty picking up small objects and moving them around • Weakness on one side of the body (or weakness in arms or legs) • Seems more clumsy, uncoordinated, or unsteady when standing or walking (for example, loses balance easily) • Bumps into things.
Trouble tasting & smelling • Complains that foods don’t taste the same; may use a lot of extra salt or other spices. • Does not smell things burning on the stove, smoke from a fire, or leaking gas. What can you do about problems with taste or smell? These problems may not go away, but your loved one can live safely in spite of them. • Add extra spices to their food (try to use spices
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Visual problems • Double or blurred vision • Trouble seeing things in some parts of space (for example, can’t see things in left side of space). What can you do about visual problems? • Tell your doctor about the problem. Ask to see to an ophthalmologist (a doctor that works with the eyes). Often, glasses that worked before the injury won’t work after because of changes in vision. Your family member may need a new prescription. • It may be unsafe for your family member to drive until a doctor says it is okay.
other than salt because too much salt can cause health problems). • Have a smoke alarm in the house so your family member does not have to rely on smell to know that there’s a fire. A carbon monoxide detector would also be a good idea. Tiredness & increased fatigue • Always complains of feeling tired. • Sleeps longer than usual at night, or sleeps a lot of the day. • Can only do a little activity at a time. For example, must sleep several hours after a trip to the grocery store. What can you do about tiredness? • Understand that feeling tired is normal after injury (but also be aware that depression and/ or lack of sleep may be an issue). • Allow extra time for rest between activities. • Schedule shorter activities at first, and gradually increase activity little by little as your family member gets stronger. • If your family member has trouble sleeping at night, talk to your doctor about medications that could help. • Schedule important appointments and activities for times of day when your family member is most awake and alert. This excerpt from “Picking up the pieces after TBI: a guide for family members” is reproduced with permission of Angelle M. Sander, Ph.D., with Baylor College of Medicine and TIRR Memorial Hermann. This free publication is available for download from www.tbicommunity.org or www.brainline.org. The work was funded by Grant No. H133B03117 from the National Institute on Disability and Rehabilitation to TIRR Memorial Hermann.
Respite & residential care Different types and how to access them
After an injury, people often need support 24/7. This is very tiring, and can be next to impossible at times. It is important to understand that it is okay to ask for support and take breaks to recoup your strength. Respite care Carers often don’t like to admit they need time off but respite care allows someone else to step in and give you that break for a few hours, a day, a week or more. It is essential to have time to revitalise yourself so that you can go on caring for your family member. Give yourself permission. Carers often feel they must be doing something “important” or “useful” to warrant using respite – the whole point is to ensure you get time off from being useful! Placing your loved one in respite so you can relax by reading a magazine or going on a day trip is just as good a reason as any. Don’t wait until you feel stressed. You need regular breaks so that you remain healthy too. Equally, most people being cared for enjoy a new face, new conversation and new activities. Even if this is not the case, stand up for your right to access respite. It will be good for both of you in the long run.
Sometimes family and friends can provide some respite but other services are available, such as government-subsidised or commercial. For information on all types of respite, contact the Commonwealth Carer Respite Centre (free call: 1800 052 222). In-home respite: This is when someone comes to your home and looks after your family member while you go out and do things you can’t do while caring. If there is a charge, it will be at an hourly rate. Day centres: Day centres offer activities, companionship and stimulation for people in need of care. They are often used on a regular basis – perhaps a full day or a half-day each week – and some services offer weekend care. There may be a fee per session. Most can organise transport to and from the centre. Contact your local council or community health service. Residential respite care: Some residential care facilities – nursing homes and hostels – admit people for a short stay while you have a holiday or break. In some areas, especially smaller country towns, the local hospital may also be able to provide this service. Nursing homes and hostels charge standard fees. Other
services range widely in cost. Some have a sliding scale, depending on your income. In theory, you may use these residential respite services for up to nine weeks a year, usually in blocks of two or three weeks. It depends on availability however, which is based on priority and need. This is assessed by an Aged Care Assessment Team. Bookings need to be made well in advance. Centrelink allows you to have up to 42 days away from care-giving while still receiving the carer’s pension. Emergency respite: This is not available in all areas so check first with a Commonwealth Carer Respite Centre. If emergency respite is not available, it may be important for your peace of mind to have a backup plan. This could include family, neighbours or a local service, but it is best discussed in advance. This is an excerpt from For Those Who Care: A Practical Guide published by BrainLink Services Ltd and available for free download from their website. Brainlink is a statewide service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. Visit www.brainlink.org.au 14 / B R I D G E M A G A Z I N E
Wheel the spiel Lisa Cox is changing the way young people think about brain injury and other disabilities Synapse Ambassador, Lisa Cox, was a fit and healthy 24 year-old when an illness and subsequent medical complications left her with a brain injury and permanently in a wheelchair. Synapse had a chat with Lisa about the work she has been doing with young people to raise awareness about Acquired Brain Injury — the invisible disability — and promote a positive community attitude towards disability and difference. Why do you speak with young people at schools? Importantly, I try to speak with students rather than at them. They’re less likely to listen if they think it’s just another lecture from an adult. I’ve been very lucky to have strangers share their personal stories with me over the years, and I know what a positive impact that had (and still has) on my rehabilitation. This is, in a way, an opportunity for me to ‘pay it forward’ so to speak. If something I say prevents another family going through heartache then I couldn’t be happier. Young people think they are invincible (I know I did!) but as we all know, a brain injury can happen to anyone. If I’m living proof of that then I believe I have a moral obligation to share my experiences to help spread the message. I had no choices the day my brain hemorrhaged. I collapsed at the airport and spent the next year in hospital. The difference is that these young people all have a choice about things like social violence. I’ve spent many days awake in intensive care (following various operations) and there is usually a young person in there too – as a result of the poor choices they made. 15 / B R I D G E M A G A Z I N E
Why go into schools? Okay, so my credibility is about to come crashing down as I quote lyrics to Whitney Houston’s ‘The Greatest Love of All’ — “I believe the children are our future, teach them well and let them lead the way.” Seriously though, teenagers are at the age when issues like drugs, alcohol and social violence are starting to become real – and discussed more frequently. It is also the youth who shape vast areas of our social landscape and who will be the decision makers in the future – for things like the NDIS. Community attitudes towards disability awareness are best shaped in youth so they don’t become ignorant, discriminating adults. I’m not in a position to change government policy or national law so I’ll do my bit to wheel the spiel and help promote positive disability awareness! What’s the general response from young people? Usually, very little is known about Acquired Brain Injury. For example, in a room of 100 students I’ll say: “Raise your hand if you know someone with a Brain Injury” and maybe five students put up their hand. Then I show a slide filled with different types of brain injury – dementia, stroke, sports-related concussion etc. I then ask the students if they know anyone with these conditions and now 95 hands go up! I also try to clear up a few myths an misconceptions about people with a disability. What else do you thinks needs to be done or to change? Unfortunately there is no single one-sizefits-all solution. It would be a combination of changing community attitudes, reviewing
government funding parameters, and possibly adjusting current laws. Some of this would be as a preventative measure, but other times it is simply ensuring that people with a brain injury can have a better quality of life – and that answer is different for us all. Here is an excerpt from a book I am currently writing, and it’s also something I talk about with students. . . “I’d previously read that death is the greatest fear harboured by humans. Yet death is not my greatest fear (and that’s not just because I’ve tried it twice already!). My greatest fear is regret. I’m not talking about the regret you feel when your mobile phone battery runs low and you regret not recharging it before you left the house. I’m talking about the big stuff. Ugly, big regret. More than any of the medical challenges ahead of me I fear regret. Looking back at my life in years, decades or even minutes to come and feeling regret. Wishing if only I’d said or done something differently. Sure I have regret around some hairstyles I had in the 80‘s but I have no regrets about how I came to be disabled. Life is difficult a lot of the time but it’s also awesome. I’d hate to look back and regret that minute I had an extra drink before driving, pushed someone and made them hit their head or made a bad decision that permanently injured my brain”. Read more about Lisa’s story on the Synapse website at: http://synapse.org.au/our-work/publications/our-stories/ lisa-cox.aspx
Quality of life In the past, behavioural interventions have focused on reduction of challenging behaviours as the primary outcome – too often behavioural interventions have produced reduction in challenging behaviours without enhancing the broader living and learning options of the service user. Synapse has moved from focusing on reducing challenging behaviour for its own sake to considering behaviour reduction as a means to achieve personal outcomes and quality of life.
There is no magic cure for brain injury.
But life can be better. We’re dedicated to improving the quality of life of those living with an Acquired Brain Injury. Over 1.6 million Australian’s are affected young or old, it can happen to someone you love.
The introduction of a Periodic Service Review will enable Synapse to quantify and measure changes in behaviour and whether people are achieving day-to-day goals. Organisations such as Synapse that operate within a human rights framework seek to deliver services and supports that will enable clients to live more meaningful and inclusive lives in the community. The Periodic Service Review is a service evaluation instrument designed to assess the consistency of the support provided to an individual client, the ability of the staff to implement recommendations regarding individual services, and the overall quality of the services provided. This model has been adapted from instruments provided by the Institute for Applied Behaviour Analysis. Synapse is going to start measuring not only whether our clients meet their day-to-day goals but also whether our clients are experiencing increased quality of life as a result of those goals being met. We want to measure whether our clients are enjoying a life of quality using validated measures. By the end of 2013 we intend to have commenced routine quality of life measurement in our services. To become useful, data will be systematically collected, recorded, scored, interpreted and fed back in a timely fashion. We will have an ongoing system that provides the evidence base for decision making at direct service delivery, managerial and policy level to inform practice, resource allocation and policy. Ideally, as the system is incorporated into the organisation, staff will conduct their own outcome assessment and make appropriate care decisions based on this evidence. Importantly, clients, service users and families, will also become active participants in the process using models such as the Maryland Ask Me Project (Bonham et al 2004). This is an extract from Synapse’s 2013 Annual Report. You download the full report from the Publications Archive at http://synapse.org.au
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Managing anger
Anger can be a particular problem for people after a brain injury. It can lead to unpredictable behaviour, which can be destructive and aggressive. While some people with a brain injury feel at the mercy of this powerful emotion, others barely notice its presence or impact.
Tips for families, friends and carers It can be very hard when you are on the receiving end of someone’s anger. It is often directed at those closest to us and it can be particularly hurtful if it is directed at friends, family members and carers. This fact sheet provides some strategies that should help you to deal with a brain injury survivor’s anger. What can help? • You may feel you already know what ‘triggers’ their anger. However, rather than tell them what to do or what to avoid, help them discover it for themselves. • Design some experiments (or do some tests) with them, and ask them to rate their anger on a scale of 1 - 10 when they are close to possible triggers, e.g. loud noise. • When you both discover a trigger, help them find another way to look at the situation. Suggest to them that rather than saying: “Why have you got that TV on so loud, you are so selfish”, it’s better to try: “Please could 17 / B R I D G E M A G A Z I N E
you turn it down a bit, the noise bothers me.” • Agree on a prompt or sign that you can use when you believe that they are getting angry. For example, you could blow over your shoulder, indicating “blow away your anger”, to prompt them that they need to calm down. • Busy places can be difficult for someone with a brain injury, as it can be difficult to process all the information. If you see them getting angry in such a situation, encourage them to move away to somewhere quieter. Tips for families, friends & carers If the person is getting angry try to direct their attention away from the cause. You may not always know what is making them angry. You will need patience to work out what triggers the anger. Even simple things like watching people chatting freely can bring up feelings of sadness and injustice. Recommend that your friend or relative read
this article and help them to use the suggested strategies. Think about strategies to help yourself. If they have had a bad day, and they dump their anger on to you, you can think of your own coping statements such as: “That felt very hurtful, but I know you didn’t mean it that way” or “What’s this about? You must be feeling in a bad state to be yelling at me”. Conclusion Remember, it is often easier to take anger out on those closest to us and on whom we rely the most. For this reason it is important to try not to take it too personally when your friend or relative gets angry with you. Managing anger is not about taking it away it is about giving control and choice. Anger is a perfectly natural emotion and can be necessary in order to provide a serious message and to deal with serious situations.
Tips for brain injury survivors If you are aware your anger causes problems for you and those around you, you will want to learn to keep your anger under control. There are three reasons why it is important to control your anger: • It can lead to aggressive or impulsive behaviour • It can affect your thinking and speaking • It can limit your relationships with others All our skills work best when we are calm. As your anger increases it can affect how you receive information, your memory and how well you speak. This can lead to you becoming frustrated and perhaps even angrier. If you already have problems in any of these areas, your anger will only make them worse. Coping with anger The best way to reduce your anger is to remove yourself from the situation. You need to calm your body and thoughts before you deal with the situation. Then think about the following things: • Is it something worth dealing with? If so plan your response calmly. • Is it worth getting angry over? If not, let it drop. You may not like the idea of walking away because it can be seen as ‘backing down’ and make you feel inadequate. Also, an effect of your brain injury may mean it can be difficult to stop angry thoughts. You may get stuck on an idea and need to express it. Remember if you are calm it’s easier to deal with your problems and explain yourself to others.
What can help? Learn to appreciate just how powerful your thoughts are. They are automatic and can cause you to become angry for no apparent reason. It is only your interpretation of a situation that makes you angry. You may be right, but always think about other interpretations first. Write down how you feel when you are angry. You can show this to someone you trust later and get another point of view. Practise noticing how tense your body feels when you are angry, then relax and feel the difference. You will then be able to measure how angry you are, when compared to how you feel when relaxed. Try to notice the warning signs of your anger, such as shoulders rising up, breathing faster, clenching fists etc. Remove yourself from situations when you feel those warning signs. Practise relaxation and breathing exercises to calm down. Distract yourself by doing something you like, for example listening to music. Remember, everything becomes more difficult when you are angry. Remind yourself that you deserve to keep yourself calm in order to make good decisions or put your point across. When you feel yourself getting angry think of someone who normally calms you down. What might they say to you if they were there? Or think of a special calming place, piece of music or picture. Try to make this part of a routine that you can use regularly to help you cope.
Record when these ideas have helped. This will make it more likely that you will use them again when you have angry feelings in the future. Physical activity Some people believe that they must do something physical to let their anger out. While punching a punch bag is better than punching another person it may cause problems. It will use up some adrenaline, but the thoughts that caused the anger will not have changed. It is difficult to punch something and have calming thoughts as well. If you get in the habit of releasing your anger by hitting something, what happens when the punch bag is not there? If you do need to do something physical while angry, other activities such as running, swimming or gardening can help. Try to slow down towards the end of the activity to allow your body to relax and to calm yourself down. You will then be more likely to be able to think things through clearly. Conclusion Remember, managing anger is not about taking it away, it is about giving you control and choice. Anger is a natural emotion, and you may need it one day to give you a serious message. Try to anticipate your anger in order to stay one step ahead it. This article is reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to helpline@headway.org.uk to discuss any issues raised. Visit the website for great resources available for free download.
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The low down on motorbike helmets A rider’s guide to skid lids, brain buckets and crash cups
Wearing motorbike helmets can reduce the chances of death by 42% and the chances of a brain injury by a huge 69%. With stats like that, every rider should recognise the need to wear a helmet. LACK OF RESEARCH & OLD STANDARDS Surprisingly however little research or effort is applied to improving helmet design. The few research reports that do exist are some two decades old. Why? Helmet manufacturers generally feel all they need do is meet required helmet standards. These standards are mostly set by government departments, so there is little motivation to improve the existing standards. Smaller helmet manufacturers occasionally put forward new designs offering improved safety. The question is then, whether these designs have been independently tested by qualified researchers, how rigorous their methodology was, and whether the results are published in a peer-reviewed journal . FIRST, THE GOOD NEWS If all of this sounds like glum, it shouldn’t. A comprehensive European study in 1996 called COST 327 found that a broad sample of helmets complying with safety standards did a consistently good job. How good a job? The study did suggested a 19 / B R I D G E M A G A Z I N E
possible 20% improvement if standards were revised to include design features for improved safety. Here are some key considerations next time you buy a helmet. Dual density liners The foam layer in helmets is key in protection. Recently, manufacturers started using a second, softer layer of foam for comfort and better fit. A lucky spin-off was improved safety. The COST 327 study found that the foam used in single density liner helmets is designed for major impacts but is usually too hard for lesser impacts, dual density liners can allow much
better absorption of lesser impacts. To date, none of the standards have been updated in this regard. A 2001 Australian study showed that these liners, of a specific type, had characteristics that can improve helmet effectiveness, but only if the second layer is of a certain density and manufactured to strict controls. Rotational injuries Brain injury research increasingly shows that many brain injuries occur due to the sudden rotation of the brain (or angular acceleration), as well as the direct impact itself. This is relevant to motorbike riders as often the head hits the
BUYING A HELMET IN AUSTRALIA Helmets from large international companies who make and market their own helmet are generally very reliable, arising from an internal safety culture – no amount of certification can add quality to a helmet if the manufacturer didn’t build it in. Large production runs usually ensure the required density of the foam remains at a consistent level to best protect your head. Any new helmet used on the road must comply with the Australian Standard AS/NZS 1698:2006, but Australia is a very small market so many manufacturers don’t bother getting compliance for their helmets here. Some riders may buy a helmet from overseas (e.g. one that complies with the more comprehensive European standard) but risk the chance of a fine should the police inspect the helmet. The largest risk is buying a helmet that has poor quality control in production. Why? Manufacturers usually only do short production runs to service a unique standard, such as the tiny market of Australia. There are definitely problems with reliability of helmet Certification in Australia.
road surface at an angle. A USA study confirmed this kind of injury among football players. The COST 327 study concluded that helmet design should insist on a minimum tendency to induce rotational motion by minimising external projections from the helmet shell (e.g. air vents). Mills et al speculate that increasing the ability of helmets to absorb direct impacts should also reduce rotational effects. Currently two developments claim to protect against rotational injuries. The first uses a gel coating on the helmet that moves when hit at an angle to reduce rotational forces. The second incorporates a kind of suspension inside the helmet shell to dissipate rotational forces from an oblique impact. In both cases, the helmet manufacturers have contracted independent researchers to run tests, but the full reports are not available for scrutiny, and have not been published in peer-reviewed journals. It’s interesting that many riders are now attaching small video cameras to their helmets to film their ride. There is no research yet to see if this increases the chances of rotational injuries, but logic suggests it could. Flexible outer shell Only a small number of motor bike accidents result in penetration of the outer shell of the helmet. The COST 327 study found that most helmets are too stiff and only absorb impacts efficiently at levels that are not survivable. Currently the European helmet standard (ECE22) is the only one requiring a helmet shell to flex. Wear a full face helmet Most head injuries are sustained at the front of the head, with more than two thirds of skull fractures involving chin impact. While open face helmets are seen as stylish for scooter riders, and some riders find full face helmets claustrophobic, a full face helmet does reduce the chances of head injury. The chin guard reduces forces transmitted along the jaw that can cause a lethal base-of-skull injury (where your brain stem connects with your spinal cord), and also reduces rotational forces that can lead to a diffuse brain injury. It is important that the chin guard not be too stiff, and it should also be padded to reduce the chances of brain injury. Currently only Snell and the European standards test the chin guard. Helmet fit is everything It is crucial for a helmet to fit snugly. Accident statistics reveal that in 10% of motorbike accidents the helmet does not stay on the rider’s head. This can be due to a helmet that is too large or failing to using the helmet strap sufficiently tight. A simple check is to push upward with force against your helmet from various directions and see how far it moves – the results can be disturbing!
A LEGAL MISH MASH: WHICH HELMETS ARE LEGAL IN WHICH STATES? Determining which helmets are legal to wear in Australia, and in which States, can be a messy business. A key problem is that many organisations are involved, but there is no overall coordination by one governing body to ensure consistency across Australia. The Australian Consumer Law 2011, requires that any motorbike helmet supplied to the market must meet the Commonwealth mandatory standard (Consumer Protection Notice No.9) which is based on AS 1698-1988. However, Road Rules around the country now require that when using roads, a rider must wear a helmet in compliance with AS/NZS 1698:2006, a completely revised Standard with different test methods. Road Rules in some areas also include requirements for a “sticker” to aid Police enforcement. NORTHERN TERRITORY & QUEENSLAND simply require “compliance with AS/NZS 1698:2006” but with no additional “sticker”requirement. NEW SOUTH WALES Road Rules were changed without warning in February 2010 and now demand that an approved helmet complies with at least one version of AS/NZS 1698 and also “has an identifying mark from a body accredited or approved by the Joint Accreditation System of Australia and New Zealand certifying compliance with an above standard”. As a result, the helmets of thousands of NSW riders were made retrospectively illegal on NSW roads on February 2010. ACT, VICTORIA, TASMANIA, SOUTH AUSTRALIA & WESTERN AUSTRALIA: A helmet that is legal for road use under the new NSW Road Rules is illegal to use in the these States according to their State laws! Police in the ACT are instructed to look for a helmet that “has applied to it the certification trade mark of which the Standards Association of Australia”. In Victoria, the police are told to look for a helmet that is “marked with an official standards mark certifying compliance with the relevant Standard”. In Tasmania, the helmet must bear “the Australian Standards Mark”, in South Australia the helmet must bear “the certification mark of the Standards Association of Australia”, and in Western Australia must carry “a sticker issued by Standards Australia”. The problem? None of these exist! Standards Australia was broken up and sold to private buyers in December 2003 and has not issued any stickers or markings since then. Technically, it is impossible to buy any helmet you can legally use on the road in these States. This only touches on some of the inconsistencies with ensuring a helmet is legal. For a more comprehensive list, visit www.roadrider. com.au/special-features/state-of-helmets and read “State of Helmets”. Written in 2011, many Road Rules have changed since which have further confused the situation. The ACCC has recently commenced a Review of the mandatory Standard in addition to managing recalls from the Australian marketplace of a number of helmets Certified by JAS-ANZ accredited certifiers.
Never buy a helmet you haven’t personally tried on to ensure correct fit. WHICH IS THE BEST HELMET STANDARD? Regarded by many as the gold standard, the Snell helmet standard was criticised after claims that Snell-approved helmets were far too stiff in the outer shell and could cause more brain injuries as a result. Generally, helmet standards do a reasonable job of protecting the head, both in rich and poor nations. But none of the standards are up-to-date with current research, and few have incorporated recommendations. In the course of writing this article, we spoke to Guy Stanford, the Australian Motorcycle Council Helmets Committee Chair. He believes the European Motorcycle Helmet Regulation is definitely a cut above the average – it’s motorbike-specific, has higher impact attenuation, a valid chin-bar test and an oblique impact test. The problem in Australia is finding a European-approved helmet from a manufacturer who has bothered to comply with the Australian standard to access such a small market.
While recommending particular brands of helmets is beyond the scope of this article, it hopefully provides pointers in maximising your safety when it’s time to buy a new skid lid. If you ride, be sure to share this article with your mates, or email them the link below for the full fact sheet on our website. WHAT CAN I DO? The first critical step is to achieve one consistent national standard across Australia for motorbike helmets. Synapse has started a petition at https://www.change.org/en-AU/ organisations/synapse so get online and sign it. Hopefully we’ll see a less expensive and wider range of helmets with consistent standards in the near future. FOR MORE INFORMATION This is a condense version of our fact sheet “Motorbike helmets & Brain Injury Prevention”. To read the full version and see full footnotes for the research cited, please visit: http://synapse.org.au/get-the-facts/motorbike-helmetsand-brain-injury-prevention.aspx 20 / B R I D G E M A G A Z I N E
Hard act to swallow Communication and swallowing are an integral and seemingly simple part of life for most people. However, communication and swallowing may be considerably impaired following an Acquired Brain Injury (including stroke and progressive neurological conditions). The inability to understand others, participate in conversation and/or eat and drink ‘normally’ can negatively impact on an individual’s quality of life. Speech pathologists (also known as speech therapists) play a large role and can significantly help individuals in their rehabilitation of communication and swallowing difficulties. Below are some instances when you should consider seeking speech pathology services: • Swallowing difficulties (dysphagia) • Language difficulties (aphasia) • Slurred speech (dysarthria) • Oral motor incoordination (apraxia) • Voice disorders • Considering a communication aid. Rehabilitation is a journey that can take many months and years. Speech therapy should occur throughout the journey, from hospital to home and returning to work. Here is a brief case study... “When I first met Kevin, he was 1.5 years post brain injury and had made incredible progress with his speech therapy but he was still having difficulty listening and recalling information. He needed this skill so he could return to work and document maintenance requests over the phone. We worked on listening skills, strategies to remember important key points and tips on how to filter out distractions. After 10 weeks, Kevin was able to return to work part time and he continued to attend speech therapy to further improve his skills”. If you live in Queensland, you can ring AQ Rehab on 1800 180 023 or email ahealth@alzqld.org.au
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Giving feedback about behaviour Clear direct feedback can make a world of difference After a brain injury, some people will have difficulty with awareness and control of their communication, mood, social skills and behaviour. They may also not realise when behaviour is inappropriate or creating interpersonal difficulties. It is important to provide a person with immediate, direct and clear feedback regarding their behaviour.
Feedback should be simple & immediate Don’t assume a person will pick up subtle cues about their behaviour. Information that is too vague or general will leave the person unclear or uncertain about what it is you do and don’t like. For example, “I don’t like it when you shout loudly at me” is much clearer than “I don’t like it when you are rude.”
Describe the behaviour Be concrete and describe the behaviour as clearly as possible. A behaviour is something that you can see or observe and describe clearly. Behaviours can include something the person does (e.g. shouting, interrupting, touching, hitting, pinching, slamming doors, crying, uses angry tone of voice, masturbates in public) or something the person says (e.g. uses swear words, threatens to hit, talks about sexual/ personal information, tells jokes with a sexual theme).
Feedback should be clear Unspoken social behaviour rules that you take for granted should be very clear. Examples include: • “It’s not okay to touch women on the breast” • “Hands off ” • “I would rather you didn’t talk about . . .” • “You are staring at that woman . . . she might feel uncomfortable.”
Repeat information If the person has any difficulties with memory and learning, you may need to repeat the information at regular intervals, or try other memory strategies such as writing things down, using signs, checklists or prompts. If a person does not remember or learn what is expected of them immediately or quickly, you may need to build in regular reminders, possibly each time you see them. Make sure the feedback is understood If there is difficulty with comprehension or understanding of information, feedback may need to be simpler. You might need to use pictures, diagrams or other communication aids. Check whether they understand what you are saying. Tell the person which behaviours are acceptable or expected. Setting limits Setting limits is essential for consistent management of behaviour because it tells the person exactly what is expected of them in any given situation, and prevents them from having unclear or unrealistic expectations. Set limits as early as possible with the person, and set them often. These limits may need to be stated clearly with the person e.g. “I am not your girlfriend – I am your support worker”. Limit-setting may be about roles, tasks, activities, or about specific behaviours that are appropriate or inappropriate. Don’t set limits you can’t keep to e.g. don’t threaten to leave if the behaviour continues and then stay in the situation.
Talk about the behaviour Try to talk about the behaviour, rather than the person when you are giving feedback. It is important that the person feels like you support them, but not the behaviour. For example, “I understand why you are frustrated, but I don’t want to you shout at me.” or “Let’s talk about what we can do about your frustration”. Give feedback in a calm manner Try to control your own emotions. Angry or critical behaviour from you or others is likely to trigger more anger or aggression. Try to be calm and uncritical when you are giving feedback. Feedback should be matter-of-fact and firm, without strong emotional reactions such as anger, impatience, shock, disapproval or fear.
sexual content might not be acceptable, but other jokes might be; touching on the breast or bottom may be off limits, but touching on the hand may be an acceptable alternative. Be consistent about behaviour It is essential to be consistent in managing behaviour, especially in setting limits and giving feedback. Make sure the person with a brain injury gets the same message from everyone about what behaviour is acceptable or unacceptable. It is important to be consistent in giving feedback when a number of people are involved – workers, friends, family. This means you have to: • identify behaviours that are inappropriate and appropriate • decide on management strategies, • use the strategies the same way in each situation where they are needed. Watch your non-verbal communication Pay attention to your non-verbal communication (e.g. your tone of voice, facial expression, body language, and the way you dress) to make sure you are giving clear information. For example, don’t laugh at something that you don’t find funny, or if it is an inappropriate or unwanted behaviour.
Give ideas about alternative behaviours Give the person clear alternatives or choices about the behaviour you want them to stop. For example “You sound angry, do you want to talk about this later?” or “Could you wait until I have finished, please?” It is important for the person to know what they should do, not just what they are not to do e.g. ask the person to say please, or speak politely, or wait until you are finished talking. It’s important to understand why the behaviour is happening too. If behaviour is occurring because a person feels overwhelmed by a noisy environment, it is probably best to simply escape that environment than stay there and try to manage the consequences.
Encourage appropriate behaviours Notice examples of behaviour you would like to see more of, and mention it to the person and family. For example, “I’ve noticed how calm you have been today.” and “You really seem to be listening to other people’s points of view.” and “Thanks for waiting until I finished what I was saying.” Positive feedback and encouragement is an important part of learning and maintaining appropriate behaviour. Experiment with genuine ways to give encouragement. Examples include: • “I like to see how you are helping others” • “Great job!” • “I admire you for . . .” • “You seem to be very happy today” • “I like the way you did that” • “You are doing so well with. . .” • “Thank you for your help” • “You put a lot of effort into that task” • “You got that finished quickly.”
Give direction about their behaviour Redirect the person to other activities or topics that are appropriate or acceptable. Sometimes a person may need direction regarding alternative topics of conversation or other behaviours that are acceptable. For example, jokes with a
This is an excerpt from an ABIOS (Acquired Brain Injury Outreach Service) fact sheet. Visit www.health.qld.gov. au/abios/ for the full fact sheet. ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families. 22 / B R I D G E M A G A Z I N E
Anxiety disorders & brain injury
Gerowyn Hanson’s guide on letting panic attacks get you into a flap Anxiety disorders do not necessarily occur in all people who have Acquired Brain Injury (ABI), and people without a brain injury can suffer anxiety and panic attacks too. In some cases though, it can be the incident itself which caused the brain injury that will set off mental health disorders such as panic attacks. Anxiety might also be triggered by a person with ABI being unable to solve a problem or cope with a difficult or unknown situation. When that individual has experienced fear or failure with something in the past, they can feel very anxious about facing a similar set of circumstances again. What exactly is anxiety, and how do you know if you or a loved one suffers from this disorder? Below is a brief explanation of anxiety disorders with some hints and references for suffers and their friends and families. Common anxiety disorders General Anxiety Disorder (GAD) is an ever-present, long-term condition of fear in the back of one’s mind. Symptoms include tense muscles, difficulty sleeping, lack of concentration, fatigue, restlessness, shortness of breath, pounding heart, sweating and dizziness. Phobias are anxieties where people have fears about certain objects or situations so do everything they can to avoid them. 23 / B R I D G E M A G A Z I N E
Obsessive Compulsive Disorder (OCD) involves unwanted thoughts and fears which provoke anxiety. To stop these intrusive thoughts, the person feels compelled to perform certain behaviours or rituals to prevent the feared situation from happening. Post-Traumatic-Stress Disorder (PTSD) manifests after a traumatic, life-threatening event such as war, assault or an accident. PTSD can cause dreams and flashbacks where the sufferer re-lives the traumatic event and avoids anything which might be related to such a situation. Panic Disorder happens when a person has a panic attack of extreme anxiety which could be caused by any of the above-mentioned circumstances. Symptoms of a panic attack include a pounding heart, sweating, shortness of breath, fear of losing control, and even a fear of dying from what caused the attack. My case For the first time in my life, I experienced multiple anxiety disorders after a horrific car accident 10 years ago left me with head injuries. The effects of the brain injury, such as lack of concentration, irritability and short-term memory loss to name a few, exacerbated my inability to function as a normal human being
in ordinary circumstances. No longer could I rely on being able to cope with simple aspects of everyday life such as remembering to re-pack my bag before leaving the house, joining a conversation, or getting into a car. The resulting disability caused me to fear both the settings that caused the accident as well as many routine situations in daily life that a non-injured person takes for granted. My panic attacks not only affected me but also had an impact on family and friends. Recently, however, I moved from outback Queensland back to the Sunshine Coast where I can finally access a variety of supports on a regular basis. Returning to civilization has also brought me into contact with prominent people writing about anxiety, such as Bev Aisbett, the author of several books, including “Taming the Black Dog” and “Living with IT”. Anxiety, according to researchers, is a natural part of our genetic make-up and therefore has been inherited by us from our prehistoric ancestors for a very good reason. These days, however, modern humans do not have to be on high alert for sabre-toothed lions stalking us, or impending doom and destruction from disobeying the gods. The “fight or flight” rush of adrenaline motivates us to take pre-cautions against danger. Anxiety actually kept us alive.
HOW DO I HELP SOMEONE HAVING A PANIC ATTACK? • Do NOT tell the person they are being silly, or to pull themselves together and get over it. • Read about anxiety so you can understand what the person is going through. • Understand that the person might be experiencing a very real physical neuro-muscular memory of a severely traumatic event and cannot help re-living the situation all over again. • Let your friend or loved one know you are there to support them. • Prompt them to take deep breaths: slowly breathe in for the count of 4, hold for 4, and then out for 4. Increase the breathing in and out sequences to 8 counts. • It might be helpful to remind your friend that anxiety is natural and it will pass. • Sometimes a funny joke can help defuse the anxiety as a distraction or disassociation from the event. • Reassure your friend or family member that no one is laughing at them (but if someone really is, then you need to tell that person they are being very rude, as my ex-partner did once). • Listen to your loved one’s anxious thoughts and allow them to talk about the problem. • If you can see an alternative way of dealing with the problem, ask them gently, if they can look at it from another point of view. • Ask what they think the worst outcome of the scary situation will be and gently challenge them to brain-storm ways of solving the problem or handling the outcome. • Encourage your friend by telling them how well they are doing when they come through the panic attack, especially if they have faced a major fear. • Do NOT surprise the person by doing something out of the ordinary which might trigger anxiety, such as making them attend a social event, or getting into a car after an accident. Ask first if the loved one would like to try something but respect their answer if they refuse. • Remember that anxiety can keep you alive. What your loved one is about to do could be potentially dangerous, such as driving a car. It is important to acknowledge the danger and remind them that people who experience anxiety are survivors.
What can I do? The trick is not to block out the panic but, ironically, give it room to expand. When anxiety is acknowledged as a natural response to a scary situation, it will grow like a huge wave but once it crashes, it dissipates. Remind yourself that the panic attack is only temporary and occurs for a very good reason. For example, if you were at a job interview, it would be natural to feel anxious. It is important to say “hello” to the feeling, allow it to surge, and then watch it fade away. Self-talk, such as telling yourself that the outcome might not be so bad, or it is not the end of the world, can help to calm nerves. Deep breathing is another simple and very effective way to reduce anxiety. Another tool I learnt from my therapist was to pretend to be listening to a radio advertisement for a soap opera. I would imagine the outline being announced in a funny voice. For example: “today’s episode in ‘The Life of Gerowyn’ is the old ‘people think I don’t have a brain’ story again”, or something similar. After a while, the silly voice made me chuckle. It became effective in desensitising my attachment to the fear of talking to people or attending social functions. One day, I realised I had not experienced any debilitating panic attacks at social events for some time. It does not mean that I no longer feel nervous, I still do but I go out a lot more these days.
Learning coping tools from a reputable therapist is an excellent way to hone your skills for dealing with panic. Books, online sites and smart phone applications can provide valuable help, too. A recently developed technique called ACT or mindfulness has been quite effective for me. Also, methods such as EMDR (eye movement de-sensitisation reprocessing) treatment can be a huge help for reducing PTSD. Ask your GP, counsellor, or other health care specialist to write you a referral to a specialist in these fields. Facing the problem head on can be another, albeit drastic way of desensitising the cause of an attack. It is very important to remember, though, that before embarking on that course, you might need assistance from a therapist or an understanding friend to accompany you while confronting the fearful situation. Finally, be kind to yourself and seek support. Gerowyn is a regular contributor to Synapse and you can visit her blog at http://gerowynhanson.wordpress.com REFERENCES & FURTHER READING Aisbett, Bev. Living with IT, 1993; Taming the Black Dog, 2000. Harris, Russell. The Happiness Trap, 2007. Smart phone app: Let Panic Go http://www.beyondblue.org.au/ http://www.blackdoginstitute.org.au/
Indigenous projects
Synapse is committed to closing the gap, by working together with Aboriginal and Torres Strait Islander Australians who experience higher rates of disability than other Australians. After taking into account age differences, the rate of disability among Aboriginal and Torres Strait Islander Australians is almost twice the average. Synapse is building partnerships with Indigenous people in order to build on their ideas, strengths and leadership, to find practical answers to long-standing health problems such as brain injury. SYNAPSE RECONCILIATION ACTION PLAN This plan affirms our public commitment to the reconciliation process, and commits us to a learning journey which will enhance all our lives as we move to a more profound appreciation of Aboriginal and Torres Strait Islander people. SUPPORTED ACCOMMODATION INNOVATION FUND This project will provide supported accommodation for eight clients with severe and profound disabilities. It is the result of non-government, corporate, Indigenous and non-Indigenous organisations working together to provide an innovative accommodation facility and model of support. As a transitional facility, clients will move from the centre either back to country or into the care of existing service providers in the Cairns region. CHILD SAFETY TRAINING (LOGAN) An Introduction to ABI workshop was specifically tailored to child safety needs. This was presented to Child Safety Officers to increase their understanding of ABI and their ability to support individuals. Synapse has undertaken training and/or assessments and has existing relationships in the following communities: Yarrabah, Cairns, Wujal Wujal, Mount Isa, Thursday Island, Mornington Island and Normanton. FNQ RESEARCH Queensland Health facilities across the Far North Queensland (FNQ) region currently accommodate 16 (and up to 25) clients who do not require acute care. They are accommodated in hospital in FNQ because of their challenging behaviours and service inability to manage these behaviours. FNQ TRAINING (YARRABAH) Training was conducted for staff working in Yarrabah supporting children with complex care needs. The training covered topics such as Introduction to Acquired Brain Injury, Recognising Foetal Alcohol Spectrum Disorder, and Working with Complex and Challenging Behaviours. CAPE & TORRES STRAIT DISABILITY SERVICE DELIVERY This project will provide training, mentoring and assessment services to the communities of Saibai Island, Badu Island, Weipa and Kowanyama. This is an extract from Synapse’s 2013 Annual Report. You download the full report from the Publications Archive at http://synapse.org.au
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Brain facts The brain controls and coordinates everything we do: movements, feelings, thoughts, breathing and bodily functions. The brain is made up of billions of nerve cells through which messages are transmitted by a combination of electrical and chemical activity. The soft, jelly-like mass of the brain weighs around 1.3 kg and sits inside the skull, cushioned by cerebrospinal fluid. This fluid circulates around the brain and through a series of cavities called ventricles. The brain makes up only two percent of the body’s weight but uses 20% of the oxygen supply and blood flow. In fact, the electrical impulses generated by the brain are strong enough to light up a 60 watt bulb (we suggest you don’t try this at home). Brain cells begin to die if they do not receive oxygen after three to five minutes. The brain is divided into a number of parts, which have specific functions and are designed to work together. The more these parts are coordinated and in tune with each other, the better the performance. The cells of the nervous system are quite fragile and need extensive protection from being crushed, being infected by disease organisms, and other harm. It is this fragility that makes the brain so susceptible to injury. Remember the brain becomes more susceptible to further injury once damaged, so try to avoid alcohol and other drugs, wear head protection for cycling and sports, and look after your brain. After all, it’s doing its best to look after you!
Why did this happen? Why do brain injuries happen? Rick Bowie suggests thinking outside the square to make some sense out of life again.
What does it all mean? How can I work out a “reason” for my acquired brain injury? When I ask myself ‘Why do these things happen to the people they do happen to’, I find a renewed insight into the randomness of life. These things happen because they do. My injury is mine, and I am the only one who can deal with it. I can choose to let it drag me down, or I can choose to think differently about it. I choose to be my own reference point for how this injury affects me, and I choose to be my own reference point for living with it and moving forward. The fact is that my brain was injured — while finding a meaning for this may be impossible, I can find meaning in how I deal with my injured brain, and how I now live my life. Spirituality A fellow survivor I know maintains that spirituality is an important component of the healing process. With this in mind, the meaning of my experience depends on my awareness of a transcendental or spiritual reality that complements the daily reality of my life. Together they form a whole — the “horizontal and the vertical”, if you will. Ira Progoff, a Jungian writer and teacher, encourages us to look for inspiration in the darkest moments. This has been one of the most helpful bits of advice I’ve ever had. And this morning I learned that Flemish Painters like Rubens, Van Eyck and Rembrandt used to paint their canvas black and only then start on the beauty of their colourful creations. What a great metaphor to point out a way ahead! Lessons from the dark It is during our darkest, most troubling
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moments that we can grow and develop the skills we need for the moment, and onwards. Discouragement can happen so easily, and yet I can learn to discover opportunities, and reach out for them and take hold of them. Once, quite a long time ago, I was sitting in a darkened auditorium, and I became aware of a dragonfly beating its wings against an upper window. The dragonfly battered and beat against the clear glass, and I became absorbed with its plight. I wanted to shout out “Come down here, fly out the door and be free”. But the dragonfly answered my inner shout, “No, it’s too dark there. This is where the light is, and freedom. If only I can get past this which I can’t see, but only feel.” “Come down, dragonfly. Don’t die up there because of the brightness and light. The light is deceptive: it will kill you. The light is here, in the darkness.” But the dragonfly continued in frantic fighting. As I became more and more caught up with the drama of a dragonfly trying to escape into the light, I became, in a sense, that dragonfly. I fight the same impenetrable barrier in my attempts to stay in the deceptive light. The lure of light can be part of our desire to have things as they were. The terrible cost to succumbing to this is a kind of exhaustion. The paradox is that the light is in the depth of what appears to be darkness. I know I succumbed to the false light of the upper windows, which in my case was wishing I could have my old life back. Burning bushes This is a particularly Australian paradox as well: the regeneration after a bush-fire, the
plethora of wildlife after a drought has broken, and the flowers in the desert after a storm. It just seems part of the big picture that many seeds can only germinate after enduring a fire. We all can think of many other examples. Many species of frogs and fish lie dormant in the drought affected mud-caked river bed until the river flows once more. Suffering According to his own testimony, Victor Frankl, who survived three years at Auschwitz and other Nazi prisons, survived largely because he learned that in confrontations with unavoidable suffering, there is no way out but through the darkest centre of a painful experience. He had no choice on facing this suffering or not, but he could still choose how he reacted to the unavoidable suffering. Throughout my journey, I’ve come across many people who feel somewhat damaged by life. If they were given a way to talk about it, they might say they were beating against a window pane — it all looked okay, but somehow it turned ugly. For many of us who have survived our injury, the suffering has been transforming. The tragedy is that often the transformations have been towards the ugly rather than the beautiful. I look around and realise that most balance and well-being is costly one way or another, and that to be transformed is one of the most costly of all. To take oneself and one’s ongoing “journey” as the most serious of all tasks is what I discover in living with an acquired brain injury. Seize the day There was a phrase in a movie from some years ago, Dead Poets’ Society, “carpe diem” seize the day! Grab hold of the opportunity! The question is “How do I do that?” I guess the first thing for me to do is to recognise that opportunities of all kinds present themselves regularly. I want to remain open to their possibilities. I remember the words of Tony’s song in West Side Story, Something’s Coming: Could be, who knows? There’s something due any day; I will know right away, Soon as it shows. The next thing for me is to heed the advice of the ancient Greek philosopher, Epictetus, who said something like “It’s not the things themselves that trouble us, but the thoughts we have about those things”. I can’t change my injury, or you, or the atmospheric conditions that lead to bushfires, but I CAN change the way I think about those things. I can throw a pity party and feel sorry for myself, or I can simply get on with living, build an optimism for the future, and communicate this optimism to others. 26 / B R I D G E M A G A Z I N E
Queensland Victim Assist Support and financial assistance for the victims of crime
Queensland Victim Assist is the support and financial assistance scheme for victims of violent crime under the Victims of Crime Assistance Act 2009. They can provide assistance for people to get their lives back on track and recover from physical and psychological injuries suffered. Accessing financial assistance is not reliant in most circumstances on a court conviction against the offender/s. Support services Victims LinkUp (1300 546 587) is a telephone service providing information and referrals to services (including counselling) for victims and their families. Victims LinkUp can provide access to existing government and nongovernment support services in Queensland which are usually free of charge. Financial assistance Through Victim Assist, financial assistance is available for eligible victims for goods and services that will assist in their physical and psychological recovery from the crime. The act of violence will need to have been reported to a medical practitioner and to the police (in most instances) for the victim to apply for financial assistance. Through Victim Assist, financial assistance is available to a wider range of victims than before, including: • Primary victim (injured as a direct result of an act of violence committed against them) • Related victim (at the time of the act of violence was a close family member of, or dependent of, a primary victim who dies as a result of an act of violence) • Parent secondary victim (a parent who is injured as a result of an act of violence committed directly against their child) • Witness secondary victim (a person who is 27 / B R I D G E M A G A Z I N E
injured as a result of witnessing of an act of violence). Applying for financial assistance To apply, victims complete a Financial Assistance Application (Form 1) and Medical certificate (Form 3). These are available online at www.justice.qld.gov.au or hard copies can be sent out on request. For more information on eligibility, how
to complete an application form or any other matter, people can ring Victims LinkUp on 1300 546 587. What about outside of Queensland? If you don’t live in Queensland, see page 1 for the contact details of the Brain Injury Associations in other States to see if similar support is available.
CASE STUDY – PRIMARY VICTIM A 19 year old male, John, was out for a night on the town with friends to celebrate the completion of his apprenticeship as a carpenter. At around 1am the group decided to call it a night and proceeded to walk down the street to the nearest taxi rank. On the way to the rank John was approached by a known male where a verbal argument has ensued, John turned and started to walk away from the situation when he was suddenly hit a number of times around the head. The final blow knocked John unconscious and he consequently fell to the bitumen road and hit his head with severe force. As a result of the assault John was rushed to hospital and had emergency surgery and spent the next 18 months in hospital. John has a number of permanent disabilities including irreversible brain damage. He will never have meaningful employment and requires 24 hour care. How can Victim Assist help in this situation? John required substantial medical treatment, including physiotherapy and medication which will help in his recovery from the act of violence. Some of the medical expenses were covered by private health insurance so Victim Assist paid the gap fee. Victim Assist was able to reimburse the travel costs of John’s parents when taking him to regular medical appointments. John also received the full $20,000 available for lost earnings after a letter from his employer confirmed what John would have earned in the next two years. A Special assistance payment is available to eligible applicants, ranging from $130 - $10,000 dependent on the act of violence against the person. In John’s case the maximum amount of $10,000 was paid, due to the offender being charged and convicted of Grievous bodily harm, and that the Act’s definition of a “very serious injury” was met based on medical and police reports obtained. John’s circumstances were deemed exceptional by the Assessor and he was granted a number of expenses which would aid in his recovery including renovations to his parents house to include wheelchair friendly surrounds, medical aids such as a customised bed and therapeutic sessions. At this stage John has not applied for any other financial assistance but does have either six years from the final grant of assistance or until the pool of $75,000 is exhausted. No two victim’s road to recovery is the same and all applications for financial assistance are made on a case by case scenario. While John’s act of violence has changed his and his family and friends lives forever, we hope that in some small way we have helped in his recovery.
What a beautiful noise Paul Gianni on dealing with sensory overload
I went to a Neil Diamond concert. “So what’s the big deal?” you might ask. I’m excited because I lasted through the whole thing without any negative affects. So you might ask “What negative effects?” To answer that question well, I have to go back to 1991 shortly after my accident. Staying awake wasn’t always easy I was taking so much medication I never could have stayed awake through the night without getting a raging migraine. The right side of my head would feel as if someone was using it for a drum – just constant pounding. Now that I no longer take those drugs, I do not feel the need to sleep as much. While I still sleep more than my wife, I do not sleep anywhere near as much as I did when medicated (this is just my opinion, but I think ceasing the drugs was a benefit because now I am able to do more). Dealing with crowds Next, the crowd would have posed a major problem for me. Before my accident, I practically lived in the shopping malls. All the sales clerks in almost every store knew me on a first name basis. In the beginning stages of my recovery after my accident, I could not even bear the thought of walking into any store. Too much input from too many sources drove me crazy. My head would spin then I would get very dizzy and have tunnel vision. Then my
body would stiffen. The only thing that would help my predicament was for me to get outside. I simply could not handle being in a crowd. Easily irritated A while after I ceased my anti-seizure medication and got accustomed to being around a few people, I was still highly irritable. The smallest inconveniences would seem to me like a major ordeal. I was very argumentative, and often found myself exploding with little to no provocation. If I was unhappy with somebody around me, I let them know in a very direct and tactless fashion – I was extremely blunt. Often my displeasure led to childish fits or tantrums.
My wife insisted I leave them alone because people come to concerts to dance and have fun. We took seats just above the floor where we actually got a much better view. While on the floor level, we had to look up at the stage but from our new location we could look down on the whole scene. After he finished his set and first encore, my wife and I realised he would not be coming out again. We headed for the exit before the rest of the audience packed the halls. Many people remained in their places applauding, hoping for a second encore. We were pretty sure that was not going to happen, so we left in order to avoid being sucked into the huge crowd.
The concert At the concert I had floor seats; two rows in front of me a couple women would stand at the beginning of each song, clap and dance a bit, then sit. They were like a couple of automatic, sound-activated toys. I wanted to get their attention and let them know that everybody behind them paid just as much as they did for floor seats but my wife thought that would be out of line. I replied, “Why is it wrong for me to say something to those two knuckle-heads who are disrupting the concert for everybody else? Should everybody be inconvenienced because of their rudeness? Also, by not doing or saying anything to stop them, are we advocates of their selfishness?”
Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from www.lapublishing.com/blog
Words of hope My reason for writing this is not to gloat over the fact that my wife and I had floor seats to Neil Diamond, but to share words of hope. Early in my recovery I did not realise how irritable I was. When I did notice, I still could not control my behaviour (I felt as if someone else were in charge of how I acted). I hope my words reach survivors and their families to encourage them to not give up hope. Recovery may take a while, but it will happen more quickly if you work at it.
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Happiness Annoyingly elusive for many, happiness can be a rare state following a brain injury, not only for the person who has acquired it, but often their partner, family and carers suffer as well. Understanding and seeking happiness can be a proactive way to fight the depression and despair that can encroach on our lives. What makes people happy? If money doesn’t buy happiness, what does? Recent research asked people this very question and came up with the following sources of happiness: • Relationship with children • Friends and friendships • Improving the lives of others • Relationship with partner and romance • Degree of control over one’s life • Doing fun things in one’s leisure time • Relationship with parents • Spiritual life • Holidays. Bring on Charlie Chaplin It’s true, laughter can often be the best medicine. But often there is little to laugh about after a brain injury. A common aftereffect can be a difficulty grasping humour as it involves surprisingly complex cognitive skills to appreciate irony and sarcasm. Some will find they have regained an appreciation for slap-stick comedy and it may be worth seeking movies with a simpler approach to getting laughs. Every time we laugh it triggers all sorts of neurotransmitters in our brain that fight off the negative thoughts. This chemical boost is so effective that laughing groups have formed because even forcing laughter seems to trigger a chemical avalanche that leads to true mirth.
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What’s happy according to psychologists If money doesn’t bring happiness, what does? Commit random acts of kindness — being generous and being thanked by others always boosts chemicals in the brain that will cause you to smile. Focus on enjoyable moments. There are always positive things happening that we take for granted — the taste of a cool drink after exercise, sun on the skin during winter, the tang of a good Thai curry. Don’t take these for granted! List the good things that happen to you. Every day write down a few things you are thankful for, even if it is only a lack of torture or starvation in your life. Look at practical ways to reduce stress and difficulties in your life. As the old prayer suggests, use your strength to change the things you can, and your patience to accept the things you can’t change. Forgive others. Don’t hold on to bitterness as this will usually only hurt you. Spend time with friends and family. Research consistently shows that this is far more important to your happiness than money, status or even good health. Thank others who have helped you, or been an inspiration. They’ll be pleasantly surprised and it will develop a happily positive nature within. Work out the new you There are many changes after a brain injury, and these often involved the personality. Everyone, including the survivor, may wonder who this new person is, and often have trouble accepting the new identity. This is particularly the case when many of the changes may be for the worse.
How we see ourselves is an integral part of our happiness. One of the most challenging tasks is learning to accept this post-injury identity, and where possible appreciate the new aspects it brings. This, of course, can be a huge challenge. For someone with debilitating fatigue, it may be learning to smell the roses and learning to find self-fulfillment in things that don’t require achievement through employment. For those who struggle with anger or poor social skills, it may be working hard at self-development and then passing on their hard-won experience to others. In fact, many who have survived a brain injury find that helping others who are new to this disability brings a huge sense of satisfaction and happiness. It may provide some sense of meaning as to why this injury occurred (it allows you to help others). It will help take the focus off yourself, and research consistently shows that selflessness has strong links with happiness. Finally, you will inevitably encounter those who have it worse than you (in a coma for example) which helps in realising maybe your situation is not so bad.
Improving self-confidence A brain injury has a massive impact on how we feel about ourselves — unfortunately it is rarely for the better A brain injury can directly lead to depression and fatigue which can have a major impact on self-esteem. A group of people who had acquired a brain injury once met to discuss and find strategies for issues such as self-confidence. They felt the key components to confidence were having a purpose to life, feeling loved, doing well in their chosen roles, having hope for the future, and being content with who they were. A brain injury was seen as impacting on every issue discussed, with the result that self-confidence was always a problem following a brain injury. Key factors in self-confidence The group found that the degree of understanding shown by people close to them, and the reaction of the general public, made a big difference to how they felt about themselves. Families who understood the effects of the brain injury, and were supportive instead of critical, played a major part in the brain injury survivor feeling more confident. This issue was a difficult one when there were no outward visible signs of a brain injury, such as a wheelchair or facial scarring. In these cases, families were more likely to be critical of the person’s cognitive problems. Those who constantly compared their current situation and abilities with their situation before the acquired brain injury had more trouble with self-confidence, as did those who could not cope with negative comments from others. Assertion Assertion was seen as critical in becoming more confident. Many felt that they tended to be resentful and sullen, or became abusive and aggressive in conflict situations. The passive
approach was seen as letting others “stand on” them and push them around. It also involves agreeing with others despite personal feelings. This often led to resentment and levels of distress building up over time. The aggressive approach was viewed as people “getting their own way” by arguing, making demands, threatening and generally stepping on others. Although people who use this approach may get their own way a lot of the time, others often did not want to be around them so isolation would occur. They discussed how the ideal is two-way communication, in which problems are solved and the message is put across in a way that allows people to feel good about themselves. Survivors knew that they needed to work on communication skills so that they could see the other person’s viewpoint and know how to approach topics appropriately. The group agreed that body language was an important part of being assertive, including maintaining eye contact, straight body posture and calm speech. Sometimes it helped to practise what they had to say to someone by practising with another person first. Personal strategies for self-confidence Brain injury survivors have suggested the following personal strategies for feeling better about themselves: • Hang around positive people • Become more self-aware and get rid of negative, unhealthy, unproductive thoughts • Take up enjoyable hobbies • Set realistic goals, recognise small gains and achievements and reward yourself • Use problem-solving skills for the bad times
• Help someone else • Practise relaxation • Write a poem or essay that has personal meaning • Work on meeting new people and improving existing relationships • Make a plan for keeping in contact with others — do something social every week • Be assertive and communicate your needs to others — not aggressively or passively • Persist despite setbacks • Join a support group for survivors Maintain good health by eating well, • exercising and getting sufficient sleep • Use humour and see the funny side • Accept personal limitations while aiming towards self-improvement • Get into positive books and movies • Grasp opportunities, experience life and make the most of it! Mantras Some people found mantras useful. These are personal statements or affirmations that can help you get through a tough time. Some examples are: • “If I change my thoughts I change my world” • “If it is to be, it’s up to me” • “Always stop and think before I act” • “Learning is an active process and I will learn by doing” • “Actions speak louder than words”. Many people take comfort in the centuriesold prayer — grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. 30 / B R I D G E M A G A Z I N E