In this issue
An evidence-based approach: Brain Injury and Brain Disorders And yes, they are the same thing... sort of.
BRIDGE VOLUME 14 - March 2014
ISSN 1448-9856 General Editor: Contributing editors: National Development Manager:
Barry Morris Alice Corcoran Jessica Irons
About concussion By Sports Concussion Australasia
Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: email@example.com W: http://synapse.org.au
The Bridge is the quarterly magazine produced by Synapse, an organisation dedicated to improving the quality of life of people living with and affected by Brain Disorders. Published nationally, internationally, and online, it features practical strategies, current news and research, and personal stories. We welcome contributions and news, especially from academics, community groups, other organisations or those who have personal experience to share.
By the National Stroke Foundation
Advertising rates available on request. 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.
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03 An evidence-based approach: Brain Injury and Brain Disorders
And yes, they are the same thing... sort of.
05 Multiple sclerosis
The facts from MS Australia
06 Brain tumours
By the Cancer Council Queensland
07 About concussion
By Sports Concussion Australasia
By the National Stroke Foundation
10 Caring for a partner
Dianne’s journey after her husband’s stroke
11 Is it justice?
Injustice, the justice system & brain injury
13 Brain disorders and dementia
By Alzheimers Australia (Qld)
14 Family concerns
A brain injury affects the entire family
15 Alcohol-related violence
An objective look at a hot topic
17 Brain injury? But you look fine!
How to respond to when they don’t believe
19 Why I care about Youngcare
Get young people out of nursing homes
21 I’m bored - I’m chairman of the board
Tips on fighting boredom in recovery
23 Common questions about behaviour
25 Living with traumatic brain injury
Moving forward after a brain injury
26 Intimate relationships
Brain injuries make these even trickier
27 A bumpy ride
The tough journey caring for a partner
29 Making the most of memory
Handy tips from our cousins in the UK
bridging THE GAP Learning, Collaboration, and Planning for the Future In Synapse’s 30 year history we have seen and experienced a lot. We have seen carers and clients achieve the seemingly impossible. We have seen advancements in medicine and therapies; such as neuroplasticity, early intervention, behavioural intervention and advanced brain mapping. What we have struggled with over the last 30 years, is an accurate, evidenced based definition of “Brain Injury”. While we continue to fight for awareness and education, we are often amazed at the lack of understanding by doctors and disability workers around what a Brain Injury actually is (or that it even exists)... maybe we shouldn’t be so surprised. With significant misdiagnosis or no diagnosis at all, the “Invisible Disability” lives up to its name; it’s no wonder for the lack of evidence and research. So here is our learning...
Most of what we have been calling Brain Injury in the past is actually a Brain Disorder (technically called Neurocognitive Disorders). A Brain Injury is part of a spectrum of disorders relating to the brain. Here is an easy way to think of it; a Brain Injury is more around a specific ‘injury’ to the brain, such as an accident, a king hit, or lack of oxygen. A Brain Disorder is more around brain degeneration such as MS, Parkinson’s or Alzheimer’s. Why is this even important? The National Disability Insurance Scheme (NDIS) is being rolled out across the country, and the assessment tool being used is primarily functional; it does not take into account the significant cognitive or behavioural issues that are so common with our clients. Unfortunately,
Jennifer Cullen, CEO of Synapse
this will affect the level of care or support some people will receive. This definition is important because we believe that everyone with a disability deserves a quality of life based on their decisions and choices. Every organisation featured in this edition provides services to people affected by Brain Disorders, and most of the time we work seperately. Synapse believes in working together, through sharing costs, resources and research. Diagnosis is important, but labels aren’t... we must work collaboratively if we are going to provide meaningful services to the people who truly need them.
Jennifer Cullen CEO of Synapse
AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS QLD QLD QLD AUS NSW VIC TAS WA SA NT
Synapse Inc. ABIOS (Acquired Brain Injury Outreach Service) Headway Gold Coast Brain Injury Australia Brain Injury Association of NSW BrainLink Services Brain Injury Association of Tasmania Headwest Brain Injury Network of South Australia Somerville Community Services
T: 07 3137 7400 T: 07 3406 2311 T: 07 5574 4311 T: 1 800 BRAIN1 T: 02 9868 5261 T: 03 9845 2950 T: 03 6278 7299 T: 08 9330 6370 T: 08 8217 7600 T: 08 8920 4100
E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com E: firstname.lastname@example.org E: email@example.com
www.synapse.org.au ww.health.qld.gov.au/abios www.headwaygoldcoast.org www.braininjuryaustralia.org.au www.biansw.org.au www.brainlink.org.au www.biat.org.au www.headwest.asn.au www.binsa.org www.somerville.org.au 2 / BRIDGE MAGAZINE
An evidence-based approach: Brain Injury and Brain Disorders And yes, they are the same thing... sort of.
Over 1.6 million Australians are affected with some form of Brain Disorder - that’s over 1 in 12 according to statistics from the World Health Organization (2006). Brain Disorders (technically called Neurocognitive Disorders) are a complex spectrum of disorders 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 includes 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 3 / BRIDGE MAGAZINE
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. With your help we want to show the community how to send a message of support to all those adults and children living with a Brain Disorder: • When “one punch doesn’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 our work and the work of our
affiliates across Australia, we know that the current statistics don’t mirror society. They grossly underestimate the real numbers, and many people with a Brain 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 Brain Disorder compared to breast cancer and yet very few people know about Brain Disorders (AIHW, 2010). Recognition of brain disorders, preventions strategies and long-term support for those affected are all long overdue.
HAD ENOUGH? WE CERTAINLY HAVE!
It’s time to turn our outrage on those who hide behind alcohol, drugs and anonymity. It’s time to turn the tables on the ‘dicks’ who think bashing some poor stranger will make them feel better about themselves. The only thing this senseless violence has ever achieved is to ruin people’s lives. Far too many lives. Far too many times. We know because we deal with the human tragedy that follows. Enough is enough. Add your voice across social media to help get the message out... that violence destroys lives! Here’s the hashtag #DontBeADick. Now use it!
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Fetal alcohol spectrum disorder (FASD) Fetal Alcohol Spectrum Disorder is an umbrella term used to describe a range of disabilities and a continuum of effects that may arise from prenatal alcohol exposure, and it is widely recognised as the most common preventable cause of birth defects and brain damage in children. FASD is not a clinical diagnosis in itself but represents a range of diagnoses that fall under the spectrum. These diagnoses are Fetal Alcohol Syndrome (FAS), partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurodevelopmental Disorders (ARND) and Alcohol Related Birth Defects (ARBD). How much alcohol is safe during pregnancy? Alcohol is a teratogen and a neurotoxin i.e. an agent that is known to adversely affect fetal development and cause birth defects and brain damage. Researchers do not know how much alcohol, if any, is safe to drink during pregnancy, and there is also no safe time for consuming alcohol. What they do know is the risk of damage increases the more you drink and that binge drinking is especially harmful. So less alcohol is better but even small amounts may cause changes to the developing brain so no alcohol is the safest choice for a healthy pregnancy. Diagnosis & prognosis FASD is a lifetime disability. It is not curable, however early diagnosis and appropriate interventions can make an enormous difference to the life of the person with the disability. An individual who receives a correct diagnosis is in a much better position to benefit from intervention than one who is not diagnosed or mis-diagnosed and receives only partial treatment. What are some of the signs? Children who have been exposed to alcohol during pregnancy, may have problems with learning, remembering things, attention span (ADD/ADHD), communicating, doing maths and/or controlling their behaviour. A minority of children with FASD may also be small, their faces may look different, and they may have vision and/or hearing problems. Because of their disabilities, people who are affected by FASD may have special needs that require life long help - even when they are adults - regarding handling money, learning, understanding the consequences of their behaviour, interacting with other people socially, and keeping a job. This information is an excerpt from the website of the Russell Family Fetal Alcohol Disorders Assocation (RFFADA). Visit http://rffada.org for more information on these disorders. The Foundation is dedicated to ensuring access to diagnostic services, support and multidisciplinary management planning in Australia, and that carers and parents are supported with a “no blame no shame” ethos.
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Multiple sclerosis An estimated 23,000 Australians live with multiple sclerosis (MS) The term ‘sclerosis’ is a Greek word meaning ‘hardened tissue or scars’. These scars form as a result of cells in the body’s own immune system entering the central nervous system and causing inflammation to the brain, spinal cord and optic nerves. Recurring episodes of MS can cause many scars to appear in the central nervous system as inflammation created by the body’s immune system cells breakdown myelin, the insulating material that covers the nerve fibres. This can result in impairment of motor, sensory and cognitive functions to a greater or lesser extent. ‘Multiple’ describes other aspects of what is often a frustratingly unpredictable disease. Episodes can occur at varying times affecting different areas of the central nervous system. There is no one symptom that indicates the presence of MS. No single test can establish an accurate diagnosis. It can be benign - in rare cases apparently disappearing altogether after one or two episodes. Or it can progress steadily over many years, bringing about a slow deterioration in an individual’s capabilities. In reality, no two cases of MS are the same. No one knows the exact cause of MS, but a mixture of genetic and environmental factors are likely to play a role in the development of the disease. Symptoms MS symptoms are varied and unpredictable, depending on which part of the central nervous system is affected and to what degree. The symptoms can be any combination of the five major health problems, including:
• Motor control - muscular spasms and problems with weakness, coordination, balance and functioning of the arms and legs • Fatigue - including heat sensitivity • Other neurological symptoms - including vertigo, pins and needles, neuralgia and visual disturbances • Continence problems - including bladder incontinence and constipation • Neuropsychological symptoms - including memory loss, depression and cognitive difficulties. Treatment & management There are numerous treatments available to ease specific symptoms and slow progression of the disease. Medications might also be prescribed to manage acute symptoms such as pain, spasticity, fatigue, and bladder difficulties. There are also many important lifestyle tips that some people have used to limit the impact of MS on their lives. Ultimately, each case of MS is different and treating and managing MS symptoms really comes down to an individual, their families, carers and loved ones finding the mix that best suits them. MS Australia is the national peak body for people affected by MS, including carers, loved ones, fundraisers, the MS research community and of course people with MS. This article is an excerpt of important information available from their website at http://ms.epublisher.com.au
Brain tumours Practical advice from the Cancer Council Queensland
A brain tumour can be benign (noncancerous) or malignant (cancerous). It can also be a primary tumour, arising in the brain itself or a secondary tumour, spread from another part of the body. In benign brain tumours, if the tumour can be removed successfully it should not cause any further problems. However a small proportion do regrow slowly and these recurrences can usually be removed, when necessary, by a further operation. It is very rare for primary malignant brain tumours to spread to other parts of the body, but they may cause problems by invading the normal brain tissue which surrounds them. Many brain tumours found and treated early cause little or no permanent damage to mental or physical abilities. Many others can be treated with surgery, radiation, chemotherapy or a combination of these methods, resulting in prolonged life. Each year, further progress in treating this disease is made by dedicated researchers. What to expect The effects of a brain tumour are varied and usually depend on the type of tumour, the size, and location in the brain. The brain is surrounded by a bony skull and there is a limited amount of space inside the hard confines of the skull. This means the growth of anything that doesn’t belong there causes changes in normal brain function. These changes may be temporary or permanent, depending on the cause. Tumours may cause direct pressure which affects brain cells, shifting of the brain due to tumour growth, or pressure which affects brain areas distant from the tumour, causing changes in their function. You may experience several generalised symptoms. These can be
due to emotional or physical stress caused by treatment or by the tumour itself. Lack of appetite, depression, irritability, fatigue, sleeplessness, sexual difficulties, erratic memory and restlessness are common complaints. Nausea, bladder problems or constipation can also occur. Blockage of the natural flow of cerebrospinal fluid (CSF), the brain’s ‘water bed’, may cause problems. Some may need a by-passing (shunt) to relieve the blockage. Irritation in parts of the brain caused by a tumour may result in epilepsy. Interruption of nerve function may result in weakness or loss of muscle control. If this involves one side of the body, it is called hemiplegia. Medication used to treat brain tumours, for example, Dexamethasone, can also cause side-effects such as irritability. Remember, your health care team is there to help you deal with these problems. Coping strategies There is no one right or wrong way to cope with the challenges of a brain tumour but the following strategies may help. Don’t bottle things up. It is normal to experience difficult thoughts and feelings after a brain tumour diagnosis and treatment. Upsetting thoughts can build up like steam in a pressure cooker. Talking about how you feel can relieve some of the pressure, allows others to understand, and opens the way for others to offer support. Some people find that writing down their thoughts and feelings provides a release and helps them gain perspective. Take up offers of support. Think about what would make a difference to you (e.g. go with you to appointments, keep other people informed, cook meals, drop off children, attend an activity/outing with you). Then when people offer to help, you can give them some ideas in
advance. This helps you as well as allowing others to feel useful and more involved in your journey. Make regular time to unwind. Don’t wait for feelings of stress to become overwhelming. Make sure you plan to do something to wind down each day such as going for a gentle walk, listening to music, doing meditation or just spending time alone. Take care of your health. Exercise and good nutrition can help you to cope mentally and physically with the demands of diagnosis and treatment. Even gentle activity can sometimes help with fatigue and reducing feelings of stress. Eating the right kinds of food during and after treatment can help you feel better and stay stronger. Avoid numbing the pain with drugs or alcohol. Trying to avoid unpleasant emotions by numbing them will only make things more difficult to cope with in the long run. Know where to go for support. There are a number of services that can provide you with different types of support during and after treatment. Support groups provide information and contact with others in similar circumstances. This is an excerpt from information provided by Cancer Council Queensland which is committed to providing all Queenslanders with the best possible prospects of preventing, detecting, effectively treating and surviving a cancer diagnosis. Contact the Cancer Council Helpline by ringing 13 11 20 to discuss support services to suit your needs.
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About concussion Dr Ryan Kohler explains how to keep our athletes safe on and off the field
Concussion is a disturbance in the ability of the brain to take in and process information. The slower function of the brain represents damage to nerve cells (neurons). The neurons can be damaged by a direct blow to the head, which causes the brain to collide with the skull. Indirect impact to the body can transfer an impulsive force to the brain and have a similar outcome. The effect varies from athlete to athlete, producing signs that depend on which part of the brain has been affected. Concussion signs visible to others at the time of the collision include: • Loss of consciousness / unresponsiveness • Upper limb muscle rigidity • Upper limb spontaneous movement • Loss of overall body tone
• Loss of control of the neck (“rag doll effect”) • A fit / seizure soon after contacting the surface • Balance difficulty • Slow responses • Vacant stare • Confusion • Disorientation • Holding the head • Facial injury • Speech slurring. After the impact injury, the athlete can start to feel unwell as a group of symptoms start to randomly present themselves. The athlete may complain of: • Headache • Nausea / vomiting • Blurred vision • Memory loss / difficulty
KEY MESSAGES ABOUT CONCUSSION Two to three players in your team this season will have a concussion. An athlete does not have to lose consciousness to have a concussion. Suspected concussion? The athlete must stop playing, and not return to sport or training that day. Symptoms can evolve over time – keep monitoring the athlete for at least 72 hours. All athletes with suspected concussion should see a medical doctor as soon as possible.
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• Dizziness • Tiredness • Not feeling right • Intolerance of bright light & loud noise • Sleep difficulty • Poor attention & concentration • Sad or irritable or frustrated • Fatigue • Lethargic, low motivation • Slow reaction time. How common is concussion in sport? 1.6 to 3.8 million concussions occur in sport per year in the United States. Across football codes in Australia, the probability of concussion is approximately 1 in 10 across all sports. The issue It is recognised that most concussions get better in seven to 10 days. However, ignoring concussion signs and symptoms or not recognising them, can result in potentially catastrophic consequences. Acute brain swelling, traditionally referred to as “second impact syndrome” is usually fatal. Prolonged symptoms, recurrent concussion, learning difficulties, and personality problems have also been reported. A recent study showed how the recovery time from concussion became longer with each concussion.
athlete who has lost consciousness as a result of a blow to the head or body. Indications for urgent referral to hospital include: • Fractured skull • Penetrating skull trauma • Loss of consciousness • Deterioration in conscious state following injury • Increasing confusion • Worsening headache post injury • Persistent vomiting • Any convulsive movements • Focal neurological signs • More than one episode of concussive injury in a match or training session • All children with head injuries • High-risk patients (e.g. hemophilia, anticoagulant use) • High-risk injury mechanism (e.g. high velocity impact, missile injury) • Inadequate post injury supervision.
What should parents, coaches and administrators do before the season? Secondary prevention can be explained as effective preparation. Gathering baseline information on the athlete is able to provide the first step to effective post concussion treatment. The important components of concussion screening are: • Baseline brain function testing with Axon Sports • Baseline symptom assessment • Baseline balance testing. What should parents, coaches and administrators do at the event? Use available resources to recognise or suspect concussion. Any athlete with suspected concussion must be withdrawn from the event or training immediately. Furthermore, no athlete with concussion or suspected concussion should return to the same event or practice that day. ALL athletes with concussion or suspected of concussion need a formal medical assessment in the soonest possible time. Before getting to a medical doctor, be on the lookout for signs of serious neck or head injury. Protect the athlete’s neck and secure an open airway when the athlete is not responsive. Urgent hospital referral is necessary for any
See a medical doctor as soon as possible A concussed athlete should see a medical doctor with experience in managing concussion as soon as possible after the impact. The medical doctor should see the athlete on a number of occasions, performing serial assessments. At the first visit, the doctor will do a full neurological examination and document current symptoms. It is recommended that balance testing and computerised brain function testing be repeated and compared to the baseline test report. Recovery from concussion may take longer in younger athletes under 18 years of age, therefore a conservative approach to playing sport again should be followed in these cases. How does the athlete get back to sport? Athletes should only return to high intensity exercise when their symptoms have gone away and cognitive function has returned to normal. Once the athlete feels better after about 72 hours, some low intensity exercise in the form of vision and balance training can begin. Progression of exercise challenge can occur every 24 hours. If athletes start to feel unwell during or after exercise, they should rest for 24 hours and then attempt the same exercise challenge. Only when an athlete has completed all the stages of exercise challenge can they obtain written medical clearance from a medical doctor. The athlete should give this medical clearance to their coach. Sports Concussion Australasia specialises in providing Concussion Management Systems to organisations, schools and clubs. Visit www.sportsconcussionaustralasia.com for handy information and resources for parents and coaches such as the new App and wallet card key tag.
Soldier On Soldier On is about Australians coming together to show their support for our physically and psychologically wounded – we will always have their backs. It’s about giving those who have served our country the dignity they deserve and the chance to do and be whatever they choose through; providing access to inspirational activities, supporting rehabilitation and providing opportunities that empower individuals.
John Bale and Cavin Wilson founded Soldier On in the summer of 2012 to give something back to their mates and colleagues that had been wounded, physically or psychologically, on contemporary operations. John joined the Army with schoolmate Lieutenant Michael Fussell who was killed by an improvised explosive device in 2008. Cavin worked as a movements officer in the Middle East in 2010 where one of his roles was to coordinate the aero-medical evacuation of those wounded. Cavin saw first hand the effects that these wounds had on the soldiers and their friends and families.. The initial idea was to run a simple fundraising event that would give all money to an Australian charity that supported our wounded. However, even if they were able to raise money, there was no Australian charity that directly supported wounded soldiers. This was quite different to other countries where charities like H4H and the Wounded Warrior Project had dramatically changed the way the wounded were cared for in Great Britain and America. There was a clear requirement for a charity that could engage all Australians to physically and emotionally support their wounded. To achieve this, Soldier On was founded in January 2012 and publicly launched in April that year. Visit their website at http://soldieron.org.au for more information or to get involved.
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Stroke How to recognise and minimise your chances of having a stroke
A stroke happens when blood supply to the brain is interrupted. Blood is carried to the brain by blood vessels called arteries. Blood contains oxygen and important nutrients for your brain cells. Blood may be interrupted or stop moving through an artery, because the artery is blocked (ischaemic stroke) or bursts (haemorrhagic stroke). When brain cells do not get enough oxygen or nutrients, they die. The area of brain damage is called a cerebral infarct. Brain cells usually die shortly after the stroke starts. However, some can last a few hours, if the blood supply is not cut off completely. If the blood supply can be returned in the minutes and hours after the stroke, some of these cells may recover. If not, they will also die. A transient ischaemic attack (TIA) happens when there is a temporary interruption to the blood supply to the brain. It causes the same symptoms as a stroke, but these go away completely within 24 hours. Even though symptoms may go away it is also important to get treatment as quickly as possible by calling 000. Signs of stroke (FAST) Recognise the signs of stroke and call 000.
A stroke is always a medical emergency. Using the FAST test involves asking three simple questions: • Face: Check the face; has the mouth drooped? • Arm: Can they lift both arms? • Speech: Is their speech slurred? Do they understand you? • Time: This is critical. If you see any of these signs call 000 straight away. Facial weakness, arm weakness and difficulty with speech are the most common signs of stroke, but they are not the only signs. Other signs of stroke may include one, or a combination of: • Weakness or numbness or paralysis of the face, arm or leg on either or both sides of the body • Difficulty speaking or understanding • Dizziness, loss of balance or an unexplained fall • Loss of vision, sudden blurring or decreased vision in one or both eyes • Headache, usually severe and abrupt onset or unexplained change in the pattern of headaches • Difficulty swallowing. The signs of stroke may occur alone or in
WHAT YOU CAN DO TO REDUCE THE CHANCES OF A STROKE High blood pressure, high cholesterol, smoking, obesity, inactivity and too much alcohol all increase the chance of stroke. A balanced diet eating fresh foods where possible is recommended. It is also important to maintain a balance between exercise and food intake; this helps to maintain a healthy body weight. People who take part in moderate activity are less likely to have a stroke. Try and build up to at least 30 minutes of moderate physical activity most days of the week. Talk to your doctor about an exercise program as people with high blood pressure should avoid some types of exercises. Stop smoking, and stay within recommended limits for drinking alcohol. These are two standard drinks per day if you’re male and one standard drink per day if you’re female.
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combination and they can last a few seconds or up to 24 hours and then disappear. Stroke rehabilitation recovery When you first go home after a stroke your family and friends will be your most valuable support. It is important, as much as possible, to get back to the life you enjoyed before your stroke. After a stroke, both the stroke survivor and the family are often frightened about being at home again and getting used to life after stroke. Carers might be worried about leaving the stroke survivor at home alone or about the possibility of another stroke. If you have any questions and fears about being at home, talk to your doctor and the stroke team. Life after stroke has its own particular challenges that will take time, support and determination to adjust to. A stroke survivor has to get used to doing things differently and it can impact on intimacy, relationships and on work and hobbies. Help might be provided by your GP, by family or friends, from other stroke survivors or through organisations like us. The National Stroke Foundation works with stroke survivors, carers, health professionals, government and the public to reduce the impact of stroke on the Australian community. This article is an excerpt of important information available from their website at http://strokefoundation.com.au
Caring for a partner Her husband’s stroke turned Dianne Stewart’s retirement into a challenging journey
Each year we celebrate Kevin’s survival and mark this day by reflecting on milestones along the road to recovery. My husband found this difficult for the first few years, as he grieved for the lifestyle he’d left behind. But now we see it as the beginning of a “new normal” for us. From our involvement with many support groups, it is evident that everyone’s acquired brain injury is unique. Kevin is now a left hemiplegic with visual deficiencies, occasionally epileptic, and has difficulty walking. His poststroke difficulty in initiating activities and sequencing tasks has affected his personality. He can be impulsive, intractable and emotional, and sometimes gets himself into situations he can’t handle (he was previously a dynamic business executive). Coping with behaviour & emotions I am involved with a support group for partners of people who have a brain injury. Although diverse in age and background, we are alike in wanting to stay in our relationships and determined to give it our best shot. When our carers’ group first formed, it didn’t take long to work out that changes in emotions and behaviour cause the most distress in relationships with our partners. We roll with the punches when it comes to their physical limitations, but the indefinable effects of their brain injury have resulted in changes to our personalities as well. Overlooking our partners’ seeming lack of appreciation, we make allowances for their (sometimes outrageous) confabulations and have learnt to smile at the black humour of our situations. We take one day at a time – for we know that no two days are the same.
This is as good as it gets Prior to our partners’ brain injuries, each person in our carers’ group had interesting and fulfilling lives, with dreams and plans for the future. Then, through one cataclysmic event, their lives changed forever – and so did ours. Another common thread in our group is that for the first year or so, we still hoped our old lifestyles might resume – until we realised “this is as good as it gets”. Caring for someone can be a lonely experience – friends move on, people avoid asking you to join their activities, and you take on many new responsibilities. Family members with their own lives to lead try to fit you in, but often it’s just too hard. Carers often need to cope with spontaneous unsociable behaviour from their charges, and the reactions this elicits from other people. Thinking for two becomes part of the daily routine, as even the most basic task may require a decision or supervision. Typically, your own well-being becomes secondary, without the opportunity to look after yourself as before. Women can feel as if they are losing their femininity, and can easily become weary, teary and forgotten. Scant recognition of huge contributions For the younger women in our group there is the prospect of caring for a husband who is often less cognitive than their school-aged children, and they can expect a lifetime of limited independence and opportunities – financially, socially, intellectually and sexually. As their partners are still young men, their loss of independence, income, masculinity and identity is more likely to be expressed through violence, or impulsive and reckless activities.
The injured person’s parenting abilities are often negligible, and their children may respond poorly to the situation, putting more pressure on the wife/carer. I have nothing but admiration for these dedicated women who face many decades of caring for their loved ones at the cost of their own security, ambitions and independence. Their contribution is immeasurable – but sadly, recognition is scant from both society and government. Not so golden years So we don’t have the golden years we had envisaged, but life rolls on and there are many things we still have fun doing together. We get pleasure from our home and garden, family occasions, short trips away, dining out and socialising, and have become discerning film buffs and armchair football experts. We’ve made some lovely new friends, who accept our limitations. Many of them also have impairments. We consciously choose medical professionals who are pleasant and accommodating; after all, we do spend quite some time in their company. We know as patients we are entitled to be treated respectfully. Time to remember the carers I paraphrase the ditty “who takes care of the caregiver’s welfare while the caregiver’s busy giving care?” If there’s one thing I could ask of our politicians, it would be for greater recognition of the role carers play and their value to the community. Most of us have given up careers, and with it the benefit of employer superannuation to support us in our own later years. This is a real concern for carers. Perhaps in future government elections it will be our time to be remembered. 10 / B R I D G E M A G A Z I N E
Cerebral palsy (CP) is a developmental disability that results from damage to or dysfunction of the developing brain. The impairments associated with cerebral palsy are nonprogressive but permanent. Varying degrees of disability related to functional mobility (movement and posture), daily living skills, and communication / socialisation skills results from these impairments. Although Cerebral Palsy is a permanent condition, as a person learns and grows and practices skills, more control over movement may be achieved. No two individuals are affected in the same way. . . some people may suffer minor motor skill problems, while others may be totally physically dependent. With effort it is possible to maximise function and minimise the disadvantage a person experiences as a consequence of disability or society and create new opportunities for greater participation and enhanced quality of life for people with cerebral palsy. With cerebral palsy, messages from the brain may be sent to the rest of the body at the wrong time, to the wrong place, or not at all. Just like crossed telephone lines, the result is a confused muscle. Some people appear clumsy; for others, the muscles shake and jerk at the wrong time, or become completely relaxed. Cerebral palsy is not a disease - you can’t catch it. It’s also not hereditary, nor does it mean there is something wrong with the muscles. It’s simply the brain sending the wrong signals at the wrong time. Why does it happen? Cerebral palsy is usually caused by injury or changes to the brain during development. Lack of oxygen during birth, injury or extreme premature birth may also be causes. Common symptoms include: • Clumsiness • Involuntary muscle movements • Drooling • Slurred speech or no speech • Stiffness or paralysis . People with cerebral palsy have abilities and goals just like everyone else they don’t like to be thought of as victims in useless bodies - many can live independently and be very successful. The more society understands about cerebral palsy, the easier it will be for those with the condition to be accepted and participate fully in community life. This information is reproduced with the permission of Cerebral Palsy Australia, the national peak body of organisations that work with people with cerebral palsy. Please visit www.cpaustralia.com.au for more information.
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Is it justice? Suzanne Brown and Glenn Kelly from Diverge on the injustice of the justice system
People with Acquired Brain Injury (ABI) are significantly over-represented in the criminal justice system. Recent Australian and international research has found that over 40% of prisoners have acquired a brain injury. Studies that included people who experienced loss of consciousness, concussion or mild traumatic brain injury have reported prevalence rates of approximately 60% to 90% among prison populations. Given the numbers of people with a brain injury, intellectual disability, and mental illness within Corrections, it is arguable that employees of the Department of Justice work as much in a disability system as a justice system. Recent Australian research indicates that, compared to the general population, people with a brain injury have higher rates of contact with police, more court appearances and more convictions, longer periods of incarceration, and are more likely to be victims of crime. People with a brain injury generally commit relatively minor offences (e.g., 40% of offences relate to theft and road traffic infringements), are under the influence of alcohol at the time of the offence, and have difficulty accessing information about their rights or legal situation. Those who come into contact with the criminal justice system typically have very complex life circumstances. Many present with multiple and complex needs, and may be experiencing co-existing mental illness, alcohol or drug dependence, health complaints, breakdown of the family unit or unstable
accommodation. There is evidence to suggest that complex circumstances can be precipitated and exacerbated by contact with the criminal justice system. Cognitive and behaviour changes Cognitive and behaviour changes that often follow a brain injury (such as disinhibition and impaired impulse control, poor social judgement, irritability, low-frustration tolerance, anger and aggression) can lead to behaviour that falls outside societal norms and contravenes the law. For example, poor memory and executive function may result in a person forgetting to pay for purchases, or neglecting fines and being legally pursued. Impulsive behaviour may compel someone to put a grocery item in their bag, and subsequently be charged for theft. Disinhibited behaviour in a community setting, such as swearing or urinating in public, may result in charges for offensive behaviour. People with a brain injury sometimes sign contracts that they don’t fully understand (such as rental agreements, mobile phone offers, loans or a house mortgage) and then fail to comply with the agreement, resulting in prosecution for fraud. Reduced frustration tolerance, susceptibility to stress and poor anger management can result in heated social exchanges or assault (as either a perpetrator or victim). These difficulties can create a cycle where a person is charged, convicted and sentenced, rather than treated, rehabilitated and supported in the community.
In his 1983 fake documentary Zelig, Woody Allen plays a character, Leonard Zelig, a kind of human chameleon who takes on the appearance and behaviour of whoever he is with. Now psychologists in Italy have reported the real-life case of AD, a 65-year-old whose identity appears dependent on the environment he is in. He started behaving this way after cardiac arrest caused damage to the fronto-temporal region of his brain. When with doctors, AD assumes the role of a doctor; when with psychologists he says he is a psychologist; at the solicitors he claims to be a solicitor. AD doesn’t just make these claims, he actually plays the roles and provides plausible stories for how he came to be in these roles.
The cycle of recidivism Both individual factors and systemic barriers present significant challenges, and unfortunately these can contribute to a cycle of recidivism. The individual may have limited understanding of their legal rights, respond impulsively without thinking strategically through the issues, be intimidated and make false confessions, have trouble controlling their emotions in court, or have difficulty communicating. The ‘system’ may fail to identify that the person has a cognitive impairment, may fail to provide a fair and equitable response with respect to dealing with disability issues, be unable to arrange affordable legal services as needed, or not provide adequately trained staff and appropriate procedures for dealing effectively with persons with cognitive impairment. We have a long way to go in terms of equity and just responses. People with a brain injury can be disadvantaged at each stage of the criminal justice process. For example, a police officer might assume that a victim of crime who has a disability will not be a credible witness when presenting evidence, and so the case may not be pursued as rigorously. Duty lawyers may not recognise ABI (the “hidden disability”), thereby leaving a charged client to be judged without adequate consideration of their disability. People with a brain injury are not eligible for the same service supports as people with an intellectual disability. Only a small proportion of these people are managing to access specialist disability legal services.
Lack of support Release from prison to the community would normally be considered to be a positive change of circumstances, however, release planning processes can be inadequate, and individuals with a brain injury are sometimes released into homelessness, with limited or no specialist support, or time-limited support from generic services without the benefit of case history or knowledge of the ABI service sector. Individuals with cognitive deficits lose the routine, structure, and predictability of the prison environment that can help achieve stable behaviour and mood. The stage seems, then, to be set for recidivism and continued involvement with the criminal justice system. There is hope. A number of initiatives have been rolled out in recent years to address the inequities. Our team at Diverge is currently working on a booklet of rights and resources that will provide valuable information for service providers, individuals and families. Further information is available in the report “Issues and inequities facing people with ABI in the criminal justice system”, Brown & Kelly (2012). You can download the full report at www.diverge.org.au, email firstname.lastname@example.org or call 03 9329 4330. Diverge is a non-profit organisation based in Victoria with specialists in brain injury, complex cases and behavioursupport services.
To investigate further, Giovannina Conchiglia and colleagues used actors to contrive different scenarios. At a bar, an actor asked AD for a cocktail, prompting him to immediately fulfil the role of bar-tender, claiming that he was on a two-week trial hoping to gain a permanent position. Taken to the hospital kitchen for 40 minutes, AD quickly assumed the role of head chef, and claimed responsibility for preparing special menus for diabetic patients. He maintains these roles until the situation changes. However, he didn’t adopt the role of laundry worker at the hospital laundry, perhaps because it was too far out of keeping with his real-life career as a politician. AD’s condition is a form of disinhibition, but it appears distinct from other well-known disinhibition syndromes such as utilisation behaviour, in which patients can’t help themselves from using any objects or food in the vicinity. For example, AD didn’t touch anything in the hospital kitchen. His tendency to switch roles is exacerbated by anterograde amnesia (a loss of memory for events since his cardiac arrest) and anosognosia – a lack of insight into his strange behaviour. “AD seems to have lost the capacity to keep his own identity constant, as he adapts himself excessively to variations in the social contexts, violating his own identity connotations in order to favour a role which the environment proposes”, the researchers said. One wonders if politicians might acquire a similar syndrome in their efforts to be all things to all people as they try to stay in power! Conchiglia, G., Rocca, G.D. & Grossi, D. (2007). “On a peculiar environmental dependency syndrome in a case with frontal-temporal damage: Zelig-like syndrome”, Neurocase, iFirst, 1-5. Source: http://bps-research-digest.blogspot.com and authored by Christian Jarrettl
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Brain disorders and dementia Information and tips to reduce your chances of this devastating brain disorder
Over 321,600 Australians are currently diagnosed with dementia, and the impacts of the disease are felt by countless more of 1 the carers, family and friends of those affected. Research shows that people who have acquired a brain injury are more likely to develop dementia in old age than the general 2 population. Fortunately, there are a number of changes that can be made in our own lives to 3 reduce our risk of dementia, and there are a range of community organisations dedicated to improving the quality of life of those currently living with the disease. What is dementia? Dementia is a broad term used to describe a range of symptoms, the most well-known of 3 these being a gradual loss of a person’s memory. Other symptoms of dementia can include deterioration over time in speech, motor skills, thinking and planning, and the ability to carry 3 out daily tasks. People with dementia can lose their ability to control their own behaviour and may at times be socially inappropriate or 3 unaware. The disease is progressive, meaning that symptoms become worse over time, and towards the later stages of the disease people require full-time care from family members or staff in a nursing home. Dementia is a terminal disease and at present, despite the best efforts of 3 our medical researchers, there is no cure. There are a number of different types of dementia, the most common being Alzheimer’s disease, and others including vascular dementia (usually related to stroke), Parkinson’s disease
dementia, alcohol-related dementia, and Lewy Body Syndrome. While the risk of dementia increases with 3 age, it is not a normal or natural part of ageing. Although rare, people in their 50s, 40s and even 30s can be diagnosed with “younger onset” 4 dementia. How are dementia & brain injury related? Research has shown that people who have had a moderate to severe brain injury are more 2 likely to develop dementia in later life. The pattern of changes seen in the brain following a moderate to severe brain injury can appear similar to those changes seen in Alzheimer’s 2 disease. It is not as clear whether there is an increased risk of dementia for those who have 2 had a mild ABI, such as a brief concussion. Repeated, mild ABIs, such as those experienced by professional sports people like boxers and footballers, are related to a condition similar to dementia known as Chronic 5 Traumatic Encephalopathy (CTE). This condition is also seen amongst war veterans who have experienced repeated, mild head 5 traumas. CTE has particular symptoms such as changes in mood, thinking, behaviour, and 5 difficulties with balance and motor skills. Reducing your risk of dementia Researchers at the World Health Organisation (WHO) have found that a person is more likely to develop Alzheimer’s disease if they have 3 diabetes, high blood pressure or depression. A person is also at greater risk if they are obese,
FIVE WAYS TO REDUCE YOUR RISK OF DEMENTIA LOOK AFTER YOUR HEART Have your blood pressure, cholesterol, blood sugar levels and weight checked regularly by your doctor. Avoid smoking. BE PHYSICALLY ACTIVE National Physical Activity Guidelines recommend at least 30 minutes of moderate-intensity exercise (e.g. walking, dancing, swimming, cycling) most – but preferably all – days. MENTALLY CHALLENGE YOUR BRAIN For example, learn a new skill, participate in an educational course, read about interesting or novel topics, or have a regular, engaging hobby. FOLLOW A HEALTHY DIET Eat a variety of foods, including two serves of fruit and five serves of vegetables per day. Limit your alcohol consumption to no more than two standard drinks in any one day. ENJOY SOCIAL ACTIVITY Organising regular social outings with friends and family, joining a community or volunteer group, or having a regular social leisure activity (such as cards) helps keep the brain active. More information on how to maintain brain, heart and body health can be found at Alzheimer’s Australia’s website (http://yourbrainmatters.org.au).
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don’t exercise regularly, if they smoke, or if they 3 have low levels of education. Other types of dementia have other risk factors: for example, heavy drinkers are more likely to develop 3 alcohol-related dementia. Based on these risk factors, there are five important steps that we can take to reduce our risk of dementia: • Look after your heart • Be physically active and follow a healthy diet • Mentally challenge your brain • Enjoy social activity. Concerned about your memory? If you are concerned about your memory or that of someone close to you, it’s important to speak to a doctor. A doctor will be able to listen to your concerns and investigate a range of possible causes of memory difficulties. An early diagnosis of dementia ensures that a person has access to support, information and treatment options. Additionally, it provides that person with an opportunity to be involved in the early planning of their future care, including an opportunity to discuss financial and lifestyle wishes. When visiting your doctor, it may be helpful to write down your concerns before the appointment, and consider bringing along a close friend or family member for support. Thanks to Jeanette Van Luyn from Alzheimer’s Australia (Qld) for contributing this article. Visit Alzheimer’s Australia (Qld)’s website at fightdementia.org.au/Qld for a range of information and fact sheets for people with dementia, those who care for them, and the general community. You can also contact the National Dementia Helpline (1800 100 500), a free telephone service that provides information, support and advice about dementia and memory loss. REFERENCES 1 Australian Institute of Health and Welfare (2012). Dementia in Australia. AIHW: Canberra. 2 Shrively, S.; Scher, A.I.; Perl, D.P.; Diaz-Arrastia, R. (2012). Dementia resulting from traumatic brain injury: What is the pathology? Archives of Neurology, 69(10), 1245-1251. 3 World Health Organisation (WHO). (2012). Dementia: A Public Health Priority. WHO: Albany, NY, USA. 4 Sampson, E.L.; Warren, J.D.; Rossor, M.N. (2004). Young onset dementia. Postgraduate Medical Journal, 80, 125-139. 5McKee, A.C.; et al. (2010). Chronic traumatic encephalopathy in athletes: progressive tauopathy following repetitive head injury. Journal of Neuropathology and Experimental Neurology, 68(7), 709-735.
Family concerns No matter who experiences it, a brain disorder ends up affecting the entire family
“No one is immune to getting that phone call — the one that tells you something bad has happened to your family. Be it a diagnosis of a life-threatening disease or an involvement in a horrific accident, you never expect it to happen to someone you love,” writes caregiver and mother of eight Dixie Coskie. No matter who experiences it, brain injury ends up affecting the entire family. We use our brains to relate to others and to communicate our needs; and when that connection is disrupted by a brain injury, life can suddenly feel chaotic and stressful. Although the injury happened to Dixie’s 13-year-old son, she notices the rippling effect it has on her relationships with her other children, her husband, her friends … her whole life. In fact, many people notice that their family roles can change significantly after a brain injury. A spouse can become a caregiver; a child might experience challenges at school. Oftentimes, families experience a tremendous amount of stress due to the struggles they face after injury, but the good news is that there are a number of resources available that can help families navigate life after a brain injury. And like many other parents after a family member sustains a brain injury, Dixie had to learn how to talk to her other children about what had happened to their brother and how
his injury might affect their lives in the long term. What are some common concerns that families express after a brain injury? While no family is ever prepared for the life changes a brain injury brings, almost every family following a brain injury wants to know how they can help during the recovery process, and they want to learn about ways they can protect themselves against the financial, psychological and social upheaval that a brain injury can cause. Immediately after a brain injury, it’s common for families to place all their energies and focus onto the person with the injury. As the person begins to move through the rehabilitation process, family members begin to ask questions that extend beyond the person’s physical wellbeing. They want to know about what kinds of programs and services are available, and they may even seek out a brain injury support group to help gain additional insight about dealing with brain injury. After some time has passed, families begin asking questions about the long term. They want to learn ways they can minimize the damage caused by the injury, and they want to find ways to improve the quality of life for everyone in the family. Where can families turn to for support and guidance?
Most major hospitals have case managers or social workers who can suggest local support groups for families dealing with brain injury. You should never underestimate just how helpful a support group can be, because they act as information-rich meetings where people can learn about the best resources. They’re also a great forum for people to discuss the emotional side of the injury. One of the best things a family member can do is to become as educated as possible about the injury. Brain Injury Associations usually offer free information packets to families, and often have number of family guidebooks available for order or download. Another major resource available to family members are state and national conferences that focus on brain injury. Many people find themselves inspired and revitalised after attending talks and meeting other people who understand the challenges caused by brain injury. Used with permission from BrainLine.org, a WETA website. www.BrainLine.org FURTHER READING Visit http://synapse.org.au for our extensive range of fact sheets. Some of the behavioural topics include: • Changes in Relationships • Self-care Strategies for Carers and Families • Coping with Conflict. 14 / B R I D G E M A G A Z I N E
Alcohol-related violence Paul Dillon from Drug and Alcohol Research & Training Australia discusses possible solutions to this alarming trend With yet another teenager in a critical condition in hospital in NSW after being ‘king-hit’ (that so shouldn’t be how we describe this violent act) in Kings Cross, the community is yet again debating what should be done about what appears to be a growing alcohol-related violence problem in this country. What makes this incident so much more distressing is that it happened just metres away from where Thomas Kelly was killed after being punched in an act of senseless violence just months ago.
if they haven’t been a victim of alcohol-related violence themselves, there’s a good chance they know someone who has been. Over the years I have been interviewed countless times on this topic and my answer has always been the same – if you want to reduce alcohol-related problems (including violence) then increase the price of alcohol, reduce accessibility and remove alcohol advertising and sponsorship of sport. It’s a simple answer for an extremely complex problem but is that really what the evidence says?
Is there an answer to the problem? There are 70,000 victims of alcohol-related violence in Australia each year. Some 14,000 people are hospitalised, almost 3,500 of them with brain injuries, and research estimates that anywhere between 23 to 73% of all assaults in this country are linked to alcohol. This is not a small problem, it affects many Australians and
The link between alcohol and violence What is the link between alcohol and violence? Certainly heavy drinking and intoxication are associated with physical aggression, but the fact is that the majority of drinkers do not become perpetrators of violence, so the link is not so simple. The evidence suggests it is a result of a complex interaction of variables:
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• pharmacological effects of alcohol on the cognitive, affective or behavioural functioning of the drinker • individual characteristics of the drinker – age, gender, personality traits, predisposition to aggression, etc. • effects of the drinking environment – a range of factors such as overcrowding in a venue, role and behaviour of venue staff, etc. • societal attitudes and values, including a culture of drinking to deliberately become intoxicated. There is very little we can do to impact on the first two variables, so most of the research in this area has concentrated on making change to the drinking environment – e.g. making venues and the outside environments safer. Unfortunately, many (but not all) of the strategies identified in the research are often about reducing or limiting access to alcohol,
and are not supported by the hotel and alcohol lobby. As a result, governments are often too cowardly to support them. Restrictions used in the Newcastle model The ‘Newcastle Model’ is often quoted as the ‘gold standard’ in this area and is most probably the most well studied strategy in this area in the country. Prior to March 2008, Newcastle had the highest rate of alcohol-fuelled violence in NSW. A series of restrictions was placed on 14 licensed premises (most of whom were trading to 5am) including: • a mandatory, precinct-wide 3.30am closure • a 1.30am lockout • from 10pm – no sale of shots, no sale of mixed drinks with more than 30ml of alcohol, no RTDs stronger than 5% alcohol by volume were permitted to be sold, and no more than four drinks were to be sold to any patron at one time. Some of the identified (and often quoted) benefits of the ‘Newcastle Model’ have included: • 33% fall in alcohol-related non domestic assaults, a 14 year low • 50% reduction in night time street crime • 26% reduction in related hospital ED admissions. Why don’t other cities use restrictions? So if it worked so well, why hasn’t it been picked up and implemented across the country? Certainly the main reason is that the hotel and alcohol industries don’t want it to happen. There has been a general trend towards the liberalisation of liquor licensing legislation across Australia, as well as a deregulation of the sale of alcohol. This has led to a substantial growth in the night-time economy, something governments don’t want to lose. Also lobby groups fought hard to get these changes and they certainly have no intention of losing some of what they have gained without a fight! To be completely honest, there are a range of other barriers too, many of which simply didn’t exist 10 to 15 years ago. When it comes to alcohol promotion and marketing, we’re now competing with supermarket chains – no-one knows how to market like they do and the retail alcohol market is worth $14 billion a year! We are encouraged to buy alcohol in bulk, with huge discounts offered by the supermarket chains when you buy more. Pre-loading, side-loading and post-loading are all new phenomenon identified across all ages – drinking before you go out is the norm today. And let’s not forget the relationship between alcohol and sport – this is locked in tight! Play sport or watch it – drinking is usually sold as part of the experience. Cultural changes are needed too We need to make change to the drinking
environment (it’s certainly the simplest of the four variables to implement) but if we don’t try to make cultural change at the same time, we are not going to get anywhere. Everyone keeps talking only about the ‘binge drinking’ culture but let’s not forget the ‘glorification of violence’ culture that is growing, particularly in sport. Footballers bashing each other in the head and cricketers verbally abusing each other and it is being justified and even celebrated by commentators and the public alike. What can we do? So as an individual, and particularly a parent, what can you do in a simple way to start the process of cultural change? Here are my four simple tips: • Make sure to take a close look at your own drinking behaviour and try to identify the messages you’re modelling. • Footballers are footballers – they aren’t gladiators. This move towards the idea of a Roman arena that is heavily promoted, particularly in the NRL is dangerous. Young people need to be made aware that a punch on a football field is still violence and it can be deadly. • Most people who get punched do not get back up again without an injury – the violence we see on the TV, in movies or in video games does not reflect what really happens. I’m certainly not saying we should shield them from watching anything but having regular discussions about what they are seeing is vital. • Most importantly, bullying is not acceptable in any form – talk about the consequences and make your values clear. When Thomas Kelly died in 2013 I was quoted many times as saying that his would become the face of the alcohol-related violence issue and would result in some sort of change. I had no idea that we would have so many more faces to add to the list of those affected by this senseless violence in such a short period of time. Of course it’s a binge-drinking issue and increasing the price of alcohol, reducing accessibility and removing alcohol advertising and sponsorship of sport will make a difference, but we also need to address other cultural issues or we will simply be wasting our time. This is a condensed version of a post titled “Can we prevent alcohol-related violence?” on the ‘Doing Drugs with Paul Dillon’ blog. Visit http://doingdrugs-darta.blogspot.com.au to read the full version. Paul Dillon is director of Drug and Alcohol Research and Training Australia (DARTA) which provides education and training expertise as well as high quality research assistance on a wide range of alcohol and other drug issues. Visit the DARTA website at http://darta.net.au
Families facing alcohol dependency A dependency on alcohol or other drugs can emerge after a brain injury for a number of reasons. The person may have already had a problem before acquiring the brain injury. The dependency may have arisen from trying to cope with depression and frustration at the recovery process. Or personality changes arising from impulsivity may mean the controls are lifted on what was once a safe usage. If the family member with a brain injury is still in a rehabilitation program, advise the team and work with them to: • Encourage your family member to take responsibility for his or her own behaviour • Provide support and consistent feedback • Help your family member deal with the feelings that may have caused the dependency. Be aware that since brain injury may lead to decreased judgment, poor memory, and difficulty in concentration, the person may not listen to your advice. Sometimes the best way to prevent use of alcohol and other drugs is to make sure your family member has enjoyable activities and relationships to fill the day. Preventing social isolation can go a long way to preventing a drug dependency. Talk with your family member about what he or she will do when friends offer a drink. Discuss ways of coping with stress and other problems in a positive way. Go over ways to have fun without drinking. Remove alcohol, tobacco, and other drugs from the house. If that isn’t possible, at least keep them out of sight where possible. Also keep an eye on over-the-counter drugs and substances that could be inhaled. Ask one doctor to take responsibility for all medications to prevent your family member from misusing or abusing prescription medications. If drinking or using drugs is causing problems for someone you care about, you are not alone. Help your family member take charge of his or her life. You can talk with rehabilitation specialists and health educators, or attend support groups like Al-Anon and Nat-Anon. Contact the Brain Injury Association in your State for a list of useful organisations.
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Parkinson’s disease is a poorly understood disease. Many people associate the disease with an elderly relative or the odd celebrity on TV. The majority of the population understand it to be ‘just the shakes’. The reality is much different – it is the second most common neurological disease in Australia after dementia, and affects 100,000 Australians. Parkinson’s is a neurodegenerative disorder of unknown cause. While advancing age remains the greatest risk factor, one in 10 sufferers are diagnosed before they reach 40. There is no objective test, or biomarker, for Parkinson’s disease, so the rate of misdiagnosis can be relatively high, especially when the diagnosis is made by a non-specialist. Whilst living with Parkinson’s will require modifications in some areas of your life, it is important for you to remain positive during the changes and maintain a healthy and active lifestyle. A variety of medications is available to effectively treat the symptoms and help you lead a full life. Parkinson’s disease results from the loss of cells in various parts of the brain, including a region called the substantia nigra which produces dopamine. Loss of dopamine causes neurons to fire without normal control, leaving patients less able to direct or control their movement. The exact cause of Parkinson’s disease is unknown, although research points to a combination of genetic and environmental factors. The single biggest risk factor for Parkinson’s disease is advancing age. Men have a somewhat higher risk than women. People are generally most familiar with the motor symptoms of Parkinson’s disease: • Slowness of movement • Rigidity • Resting tremor • Postural instability, or balance problems. Other physical symptoms, such as gait problems and reduced facial expression, may also occur. Other symptoms can include: • Cognitive impairment • Mood disorders • Sleep difficulties • Loss of sense of smell, called hyposmia • Constipation, speech and swallowing problems. This information is an exerpt from the Shake It Up Australia Foundation, a not-for-profit organisation that promotes and fund Parkinson’s disease research in Australia. Visit their website at http://shakeitup.org.au for more information about Parkinson’s disease.
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Brain injury? But you look fine! How do you respond when people refuse to believe you have a brain injury?
Acquired Brain Injury (ABI) is often called the invisible disability because a person may outwardly appear to be unaffected, particularly if the cause was a brain tumour, near drowning, mild stroke or drugs. Even when the injury is caused by trauma such as a motor vehicle accident, the scars may heal so well that the person appears to be fully recovered. Unfortunately even a so-called ‘mild’ brain injury can leave a person facing cognitive deficits in memory, concentration, motivation, fatigue, stress, depression and reduced self awareness. Survivors of a brain injury often find that family, employers and friends have trouble accepting there can still be problems when there is no easily observed physical evidence. Family members often have the most trouble understanding the invisible nature of acquired
brain injury. With effort, the survivor of a mild to moderate brain injury can often hide or compensate for their cognitive deficits so that most people will not detect any problems for a while. But families get to see beyond the ‘public face’ due to the amount of time they spend together. After the brain injury the family is frequently confronted with a ‘new’ personality — a family member who may be negative, unmotivated, unable to carry tasks through to completion, constantly forgetting things, unable to take others’ needs into account, and prone to depression or angry outbursts. Before the brain injury, the person usually had some degree of control over these areas and how they chose to act and speak. Now they may have lost these abilities and may only regain some control through compensatory strategies, if at all.
information showing that even in cases where people were not unconscious, they may face lifelong difficulties with short-term memory, emotional instability and a wide range of other effects, a far cry from the instant recovery portrayed by Hollywood. Ongoing physical issues Unfortunately, survivors of a brain injury are often left with much more than life-long cognitive effects, such as susceptibility to stress, inability to work, memory problems and extreme fatigue. Traumatic brain injury often leaves lasting effects in terms of musculoskeletal problems, migraines, auditory and visual disabilities, and neuroendocrine disorders. Insurance companies and generic rehabilitation services are often unaware of the frequently ongoing nature of deficits from traumatic brain injury and that a ‘return to normal health’ does not occur in the majority of cases. In some cases survivors need to take legal action to obtain the rehabilitation and support that their insurance guarantees. There is a public perception that legal compensation payouts are often very large; but such multi-million dollar awards take into account that the person will need cognitive and physical therapy or support for the rest of their lives.
How to convince others How does a survivor convince sceptical family or friends that they do have a brain injury? Trying to discuss the issue is often difficult. Family members are often resentful if they have been coping with some of the more unpleasant sides of a brain injury, such as anger or self-centredness. Discussions can break down into recriminations, and the brain injury can be seen as a poor excuse for inappropriate behaviour. Families often come to an understanding of ABI through simply reading about it. Previously their ideas may have been based on what they had seen in movies — a person is knocked briefly unconscious, forgets who they are, their memory is restored by another bump to the head, then they are fine again. There is a wealth of medical research and
What about the ultimate sceptics? Some people may refuse to believe a brain injury exists unless there is firm medical proof. Usually a moderate to severe brain injury leaves scarring that will clearly show on MRI or CAT scans. The brain does have a limited ability to heal itself; and in milder cases, a scan conducted years or even months after the injury may no longer show evidence, although the cognitive deficits remain. There is also diffuse brain injury, where the damage occurs at a microscopic level throughout the brain, and will not show on scans despite the huge impact it can have. In these latter cases a neuropsychological assessment is used to identify a brain injury, its effects and the strategies needed for rehabilitation. Testing includes a variety of different methods for evaluating areas such as attention span, memory, language, new learning, spatial perception, problem-solving, social judgment, motor abilities and sensory awareness. These tests can be quite expensive. Universities offering programmes in neuropsychology often provide evaluations at low cost or on a sliding scale as part of their student training. It is no wonder that brain injury survivors get discouraged when others won’t accept that they have this disability, and the survivors have to face criticism instead of support.
In the last issue of Bridge we reported on the messy state of affairs when it comes to helmet standards and rules in Australia. The conflicting rules and regulations result in a number of issues: • Crossing some State borders renders a helmet illegal • In some States it is impossible to buy a legal helmet • These contradictions defer much-needed reform of the Australian standards for motorbike helmets • Importers are deterred by the mess so helmet prices increase and range of helmets decreases. Synapse began a petition to force the relevant Government departments to begin cleaning the mess up and begin the reforms that will lead to safer helmets and hopefully less brain injuries in the long run. There are over 900 signatures to date, with more predicted as motoring publications pick up on the issue. Visit http://synapse.org.au and read our “Motorbike Helmets and Brain Injury Prevention” fact sheet.
A brain injury can damage both mechanical and neurological processes and result in a variety of hearing difficulties. Our hearing process has two stages: the mechanical and a neurological process. The mechanical process is carried out by the ear which has three sections, the outer, middle, and inner ears. The outer ear, consisting of the lobe and ear canal, protects the more fragile parts inside. The middle ear begins with the eardrum, a thin membrane which vibrates in sympathy with any entering sound. The motion of the eardrum is transferred across the middle ear via three small bones to the inner ear where a tube called the cochlea is wound tightly like a snail shell. From here the neurological process begins and the brain translates vibration into electrical impulses. Trauma most commonly affects the mechanical process. An eardrum may rupture, any of the small bones could break or there could be bleeding or bruising of the middle ear. Sometimes damage to the parietal or temporal lobes can disrupt the neurological process. Thankfully many hearing difficulties are not permanent and can be reduced or eliminated with treatment. Visit http://synapse.org.au and read our “Hearing Problems” fact sheet.
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21% of young people in aged care facilities go outside less than once a month.
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Lisa Cox became a staunch supporter of Youngcare after acquiring a brain injury. She appeared in this Youngcare poster to raise awareness of younger people forced to live in aged care facilities.
Why I care about Youngcare Lisa Cox knows only too well that for many young Australians, aged care facilities are the only place they can call home
Brain Disorders are usually thought of as something affecting older people. But for the thousands of young people with a brain disorder who need 24/7 care, aged care facilities are usually the only place they can call home. I celebrated my 25th and 26th birthday with your grandparents. Well, maybe not your grandparents but they were somebody’s grandparents. A bit of background My story appeared in the June 2012 edition of Bridge but here is a condensed version . . . At age 24 I went into hospital following a brain hemorrhage. I was discharged a year later but returned after several months to have my hip replaced. Last year I returned for (my second) open heart surgery. See a pattern here? My health complications are similar those of older people, so I’ve spent much of the last few years in rehabilitation rooms, hydrotherapy pools and hospital wards with people old enough to be my grandparents. Don’t get me wrong, the “oldies” (as we affectionately called them) were a delight and the staff were great but I still couldn’t wait to get out! One of the things that kept me sane and optimistic was knowing that eventually I would get home to my loved ones and see friends my age again. Unfortunately, there are over 7,500 young Australians living in aged care, and sadly they may never be going home. Why are so many young Australians in nursing homes? Because they need 24/7 care
and living alternatives are very limited. It is a terrible reality but one that Youngcare and Synapse are working to remedy. Youngcare is dedicated to helping young people get out of aged care and nursing homes. I’ve been an outspoken supporter for nearly a decade and volunteered in their first Brisbane office back in the days when it was just a handful of us squished into a back room of someone else’s office. It’s been wonderful to watch Youngcare grow and gain wider community support. Like Synapse, Youngcare is improving the quality of life for people they support. But neither Youngcare nor Synapse will rest on their laurels because there is still a lot of work to be done. Young people deserve young lives Unlike my fellow patients, I didn’t have stories to share from the world wars and I didn’t have grand kids to talk about. In fact some of their grandkids were older than me! Nobody shared my taste in music or my enthusiasm to eventually re-enter the workforce – they had all retired many years earlier. I experienced the sorts of things that youth had not prepared me for, like the death of several elderly patients around me. I could go on but as I’ve said in many talks on behalf of Youngcare, aged care is no place for any young person. I’m just grateful that my living arrangements weren’t permanent. The following has been adapted from the Youngcare website and further highlights the need for change.
In addition to the 7,500 young Australians living in aged care, a further 700,000 are being cared for at home by family and friends, often with limited support. Being young is about having a lifetime ahead of you, yet aged care is designed for people at the end of their lives. The realities of aged care mean a young person will share a residence where the average age is 83 and the average life expectancy is just three years. More importantly, in most cases, their specific care needs will not be met and differ greatly to those of the elderly residents. For those young people living in aged care, statistics suggest that: • 44% will receive a visit from friends less than once a year • 34% will almost never participate in community based activities such as shopping • 21% will go outside the home less than once a month. Having overcome tremendous personal health obstacles, Lisa Cox is a passionate advocate for disability awareness and is a Synapse Ambassador. Visit http://lisa-cox.com to read more about Lisa’s inspiring story and work.
YOUNGCARE – HELPING TO GET YOUNG PEOPLE OUT OF AGED CARE Youngcare was established in 2005 following the inspirational story of one woman’s battle to find relevant and dignified care. Currently more than 7,500 young Australians (under the age of 65) with full-time care needs are living in aged care simply because there are few alternatives. There are also 700,000 more young Australians being cared for at home by family and friends, often with limited support. All young people deserve to live young lives. Youngcare is committed to raising awareness of the issue to drive change and create real choices for young Australians and their families. Youngcare’s work includes raising awareness, a support and information phone service, lobbying Government, providing At Home Care Grants, building more Youngcare housing, and undertaking research. Visit the Youngcare website at www.youngcare.com.au
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I’m bored – I’m
It’s been a few months since you acquired a brain injury. You’ve been discharged from hospital, finished whatever rehabilitation was on offer and have settled back in at home. It has been very frustrating finding all these limits on what you can and can’t do anymore. Initially you were relieved to be alive but now you are bored and finding it hard to fight depression. This is a very common state for many, as the long wait begins to see if you’ll recover enough to eventually go back to work, study, and all the things you previously did. It’s important to fight that boredom before it turns into full blown depression that is much harder to tackle. Pace yourself You will already know that if you overdo things you’ll be hit with fatigue that can take a few days to recover from. It’s crucial to not overdo things and wipe yourself out! Work out how long you do physical, mental and social activities for and stick to time limits. Also, plan these for when you feel most energetic.
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Make a new plan, Stan You had a former life that already had structure — now you have virtually none. To make it worse, your injured brain needs much more structure than before. Routine is your friend, as your brain has trouble planning your day, prioritising activities, making decisions, getting started on tasks, and realising when you have pushed yourself too hard. A weekly plan can do all this for you. Draw up a chart of your week and make time slots throughout each day. Examples of activities may include: • Exercise • Rest breaks and short naps • Social activities • Meals • Reading • Crosswords • Personal rehabilitation exercises • Housework • Hobbies. This may sound boring in itself, but a daily plan of activities can be the perfect antidote to boredom.
Rehabilitation never finishes Unless a brain injury has been very mild, it is likely that you will have some ongoing effects for the rest of your life. Don’t assume the hard work finished when you stopped seeing the rehabilitation team. People who are very motivated to continue their own personal rehabilitation often find they are still making progress years later after their brain has healed itself. Work out what issues you still face, and possible strategies to compensate for them. Work these into your timetable. Discuss all of this with your family members, especially if you have problems with self-awareness. Break big things into small steps Having a project to work on can be very motivating, but a common problem after a brain injury is feeling overwhelmed by the details, or not knowing where to start. Break it down into small manageable steps that you can work into your timetable. Celebrate the small things A brain injury can humble all of us – picture the former CEO of a multinational company
chairman of the bored Life can be tedious after a brain injury – here’s what you can do about it
Diagnosing a brain disorder Diagnosis of brain disorders has had a distinctly shaky history. Over the years, many people have acquired brain injuries which were not detected by doctors, as there was no coma involved. In fact, it has only been over the last decade or so that most medical authorities realised that a person can acquire a brain injury even when no period of unconsciousness occurs after an accident. When the head is struck or moved violently there will sometimes be no loss of consciousness, and the person may not seem to need medical attention. Even so, there may be some mild damage to the brain that can interfere with everyday living. The injury may not be diagnosed, but the person may be observed responding more slowly than usual, or complaining about physical and mental problems. Symptoms of mild brain injury may include fatigue, headache, dizziness, hearing loss, ringing in the ears, memory problems, sleep difficulties, irritability and short attention span. Although termed “mild”, this type of injury can lead to long-term cognitive problems that severely impact on the individual’s life.
who cries with joy the first time he manages to dress himself without help! Celebrate the small things, because in reality they aren’t small things at all. Usually only another person who has a brain injury can understand the incredible effort and willpower it has taken to accomplish those “small” steps. Develop those social skills This area if often neglected in rehabilitation. A brain injury can cause the following issues: • Talking constantly and not listening to others • Asking intrusive questions • Self-centred behaviour • Inappropriate comments and behaviour • Standing or sitting too close to others. Regaining lost social skills is critical to retaining friendships, making new ones, keeping healthy family relationships, and any eventual return to work, study or community involvement. If you have any of these issues, talk with close friends or family members about ways to relearn social skills and work these into your weekly plan.
Accept the new you This also means coming to terms with the new you. It is very normal to be angry, depressed and frustrated — you will need time to work through these normal emotions. But eventually you will need to accept the new you, and find reasons for liking yourself too. Sounds tough? It is, but you may find that you discover hidden strengths in your character in the struggle to rebuild a new life. Often this gives people a sense of compassion for others with disabilities that they may not have had before. Many find that a brain injury has made them a stronger, more considerate person because of the many challenges they have been through. FURTHER READING Go to our fact sheets at www.synapse.org.au and check out the following fact sheets: • Rehabilitation tips • Steps to a healthier brain • The post-rehabilitation slump • When will I get better?
Three separate processes work to injure the brain: bruising (bleeding), tearing, and swelling. In a traumatic brain injury, the soft tissue of the brain is propelled against the very hard bone of the skull. Blood vessels may tear, which releases blood into areas of the brain. The skull does not expand, so the blood begins to press on softer things like brain tissue. Brain tissue is very delicate, and will stop working properly or may even die off. With trauma, the brain is thrown forward, then bounced backward. This can result in tearing of brain tissue which breaks the connections between neurons. This happens on a microscopic level, and may not show on standard medical tests. The brain can swell in the same way a damaged muscle does. This pressure pushes down on the brain and damages structures in the brain. If there is too much pressure, this can stop important structures that control breathing or the heart rate. Sometimes, doctors will install a “relief valve” to let off the excess pressure. As with all injuries, prevention is the best cure. This particularly applies if you already have a brain injury, as you will now be more susceptible to further brain injuries. Visit http://synapse.org.au to read these fact sheets: • Treatment and Diagnosis of a Brain Injury • Traumatic Brain Injury • Diagnostic Tests and Scans.
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Why our heads wonâ€™t get bigger Anatomy prevents the exceptional size of the human brain from getting even bigger. At birth, an infantâ€™s skull is as large as it can be without endangering the lives of most, if not all, mothers and infants during childbirth. Prior to the intervention of modern medicine, childbirth was a dangerous event that frequently resulted in the death of the mother, as it still does among populations without access to modern medicine. The difficulty experienced by humans in giving birth is nearly unique in the animal kingdom, requiring the head of the emerging infant to be rotated as it passes through the birth canal. Female humans have large pelvic openings to accommodate the birth of large-headed offspring, but at a cost. The larger this opening, the thinner the bone around it. Bones too thin can no longer bear the load of the motherâ€™s weight or the mechanical stresses of walking and running, and a compromised ability to flee dangers may prevent the female from coming of childbearing age. Brain size and pelvic opening size can be considered an evolutionary trade-off between the ability of females to reach and survive their childbearing and childrearing years, and their ability to bear big-brained offspring. At birth, the human skull is rather soft; it deforms somewhat during its passage through the birth canal, then recovers its shape. This allows it to expand to make room for the brain, which continues to grow, at the same rate as that of an unborn fetus, for an additional year. In all other animals the growth rate of the brain slows significantly at birth.
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Common questions about behaviour Answers from the team at the Acquired Brain Injury Outreach Service
The team at ABIOS has years of experience in supporting people through rehabilitation after a brain injury. Here are their answers to the most common questions asked about challenging behaviours. What kind of behaviours should I expect when someone has had a brain injury? The brain is involved in all aspects of personality and control of behaviour so any brain injury can cause ongoing changes in personality, mood and behaviour. Common changes in behaviour include: • Inflexibility and rigid thinking or behaviour • Disinhibited and impulsive behaviour • Difficulty initiating or starting activities • Irritability, anger and low frustration tolerance • Lack of insight and self-awareness of problems • Lack of empathy or feeling for others • Self-centredness or egocentricity. Not everyone who has had a brain injury will have behavioural changes, but severe brain injury can cause all of these changes. For some people, changes in personality and behaviour may be the only sign of a severe brain injury. Why does behaviour change? Damage to some areas of the brain (frontal lobes, temporal lobes and the limbic system) can result in changes to the person’s ability to be aware of, to control, or to change their behaviour. This is because these areas control personality and behaviour. What can I do about behaviour problems? The best thing you can do is to get a good understanding of the person’s brain injury, and get ideas about the strategies that will help them to manage their behaviour. Ask for help from others who know about the behaviour – this might include the person with the brain injury, family, therapists, psychiatrists, psychologists or a clinical neuropsychologist, or other brain injury specialists. What are some strategies I can use to manage behaviour? There are some strategies that will help manage, prevent and reduce challenging behaviour. These include the following: • Have a routine and provide as much structure as possible
• Have good communication – clear, direct, often – and talk about issues, including the behaviour and what to do about it • Don’t be vague – tell the person what behaviour you like/don’t like • Have clear limits/rules about behaviour – what you expect, what is appropriate or inappropriate • Give the person feedback and information about their behaviour • Be consistent in how you manage behaviour • Be positive – notice and encourage appropriate behaviour (people need at least twice as much positive feedback) • Take into account changes in thinking, understanding or memory • Use strategies that defuse behaviour and help a person calm down – talk it through, change the topic, change the task • Use redirection, distraction, and diversion to shift behaviour • Use your sense of humour to defuse things and reduce tension and stress • Get support for yourself and for the person with the brain injury. How do I not take it personally? Try to not take the behaviour personally when the person is irritable, uncooperative or difficult to get along with. This can be hard when you feel frustrated, hurt, angry, upset or fearful. Behaviour problems can occur because of the brain injury and damage to particular parts of the brain, and the person may always have some difficulty with awareness, control, and management of their behaviour. The behaviour is not just directed at you – it would happen to anyone providing care (family, friends or paid staff ). It is important to tell yourself that these behaviours may be due to the person’s brain injury and not about you. However, it is okay to feel the way that you do – coping with difficult behaviour can be hard. Try to ignore as much unwanted behaviour as you can. Don’t ignore the person – just the behaviour. How can I manage stress? Get support from people around you – talk about ways to manage behaviour and cope
better – talk to friends, family, or talk to a Counselor or to a brain injury specialist. It may be helpful to talk about ideas to make things work better (try to keep it positive and focus on what you can do, not what you can’t). Make sure you take the time to have regular breaks. It is important to make the time for your own relaxation and rest, so you have enough physical and emotional energy. Keep in touch with your friends and keep up with your own hobbies and interests as much as you can. Find out about more about brain injury so you can understand any difficulties that the person may have. Is there a cure for behaviour problems? There are no easy solutions for behaviour problems after a brain injury. Behaviour is caused by many complex factors (including the brain injury) which may not change. Intervention and management may help to improve support for the person, for family, and to assist in decreasing behaviour or in managing behaviour more effectively. In summary, be realistic. Not all behaviour can be changed or prevented after a brain injury. There is no simple “cure” or “fix” for behaviour changes after a brain injury. A person may have a permanent “behavioural disability” because of the brain injury. So set goals that can be easily achieved considering: • the person • the brain injury • the resources and support available • the environment the person is in • assessment of what changes are possible. This is fact sheet is reproduced with the permission of ABIOS (Acquired Brain Injury Outreach Service). Visit www.health.qld.gov.au/abios/ to see their full range of fact sheets. ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families. FURTHER READING Visit http://synapse.org.au for our extensive range of fact sheets. Some of the behavioural topics include: • What is Positive Behaviour Support? • ABC Approach to Behaviour • Making a Positive Behaviour Support Plan. 24 / B R I D G E M A G A Z I N E
Living with a brain injury
“I got very tired of hearing how ‘lucky’ I was,” says author Kara Swanson. “This was not some vacation-gone-wrong that I would return from with horrific tales of adventure. From the moment I left that hospital, I heard slap-on-the-back choruses of ‘It could have been worse!’ and ‘God, you were lucky!’ Intellectually, I understood that. But emotionally, I did not feel very lucky.” There’s no denying that life is different after a traumatic brain injury (TBI). In addition to all the physical changes a brain injury may bring, a TBI can also mean the loss of a career or the disruption of an education. It can change your plans for the future, alter the way you meet and make friends, and affect the way you think about yourself. Life after a brain injury usually involves challenges, but that doesn’t mean life is less valuable or fulfilling. By writing a book about her struggle with brain injury, Kara was able to embark on a journey of self-discovery, one that required a tremendous amount of honesty and courage in order to face the reality of her new life. While everyone with a brain injury embarks on their own unique journey toward recovery, there are some common experiences that many people share — experiences that can offer tremendous inspiration and support at various points in life. 25 / B R I D G E M A G A Z I N E
Dealing with the injury Soon after the injury, most people tend to focus on the abilities that have been lost. Emotionally, the experience can be overwhelming, confusing, and frustrating. But as time goes on, everyone begins to grapple with their injury in both productive and non-productive ways. One common response is to deny the significance of the injury; unfortunately, a brain injury can’t simply be “walked off.” Brains are notoriously slow to heal, which only compounds the frustrating aspects of a brain injury. Brain injury also has a tendency to bring a lot of psychological challenges and may affect mental health. Depression, anger, and anxiety are common repercussions of brain injury, so people with TBI should be vigilant to seek out qualified care and support if they experience mental health problems. As people begin to regain lost abilities or acquire new coping skills, they also begin to accept the realities of their injury. At this stage, a person might express that they are no longer fighting the injury but rather seeking ways to integrate their TBI into their lives. For most people who experience a brain injury, life will return to a similar pace. But for many others, a TBI may mean months, years, or even a lifetime full of changes.
Moving forward after a brain injury A brain injury is supposed to set off a clear chain of events, all of them around a person’s medical care: the emergency room, the ICU, hospital care and then rehabilitation. But there isn’t a road map for all the aspects of life that fall outside of medical care — just ask someone like Kara, who seemed surprised that life marched on despite her injury. One of the realities about living with a brain injury is that you may need additional check-ups, routine doctor visits, or ongoing rehabilitation. Even people who feel like they’re “back to normal” may visit a neuropsychologist for periodic testing or may incorporate various cognitive exercises into their daily routine. While most people who acquire a brain injury recover quickly, for those with moderate to severe TBIs — and their families — life may need to be reinvented, reinterpreted . . . and accepted as something different. Used with permission from brainline.org, a WETA website. Visit www.brainline.org for a wide range of articles and useful information.
Intimate relationships We all need someone to share our lives, worries and joys with
“She almost died. If she had, my life would have been easier. I would have grieved the loss, and gone back to whatever it was I was doing, somehow better for it all. In time, I would have found another love. . . But she didn’t die, though the person who survived is someone else, someone other, who carries within haunting echoes of the lost one who was my wife.” In 1992, Tom Gallant “lost” the wife he knew and loved passionately when they were t-boned at a traffic intersection. Why do relationships change after a brain injury? Everyone needs to feel loved, to feel valued. Like Tom and his wife, we all need people to talk and laugh with, spend time with, share ideas, worries, and joys. But friendships and intimate relationships can often change drastically for both people after a brain injury. Here are some statements people often share after they or a loved one has sustained a brain injury: • Our friends don’t call or come by anymore. • I am lonely all the time. • I can’t relate to other people. • Other people don’t want to be around me or my loved one. • People seem to avoid me. • Who am I now? How do we all fit together now as a family? • No one understands me or what I’m going through. • I feel abandoned, rejected, unworthy, different.
After an injury, family roles can change; sometimes jobs are lost, finances can become a significant worry, and with all these changes come stresses on relationships. What can you do? Talk with people you trust. They may be able to help you figure out solutions to your problems, or talking to them may just make you realize you are not alone. Don’t isolate yourself. Friends and family want to help. Let them. Create a positive network of help and support. This can include friends and family; it can also include people from a support group who know what you are going through. Take care of yourself physically and emotionally. Some fresh air or a walk can often clear your mind and give you a renewed perspective. Consider finding a peer mentor. By establishing relationships with others who face similar challenges, you’re able to learn about local support systems and the ins and outs of dealing with them. More importantly, you can develop a relationship with someone who can empathize with you emotionally. What about sex? Talking about sex is tricky for a lot of people, especially for people — and their partners — after a brain injury. There can be a variety of sexual problems associated with a brain injury including diminished drive, physical impairments, depression and lack of self worth, among others. A change in roles within a couple
can also impact a couple’s intimacy. Once an equal partnership, post-injury a couple may feel more like a parent and a child, making intimacy far more challenging for both partners, the caregiver in particular. If sexual problems don’t resolve themselves, seeking the help of a mental health professional who is familiar with brain injury, who specialises in helping people cope with depression, and who is comfortable discussing sexual difficulties can help. There are also various treatment options to consider: • Medications for mood • Medications for sexual dysfunction • Individual and couples counseling • Referral for endocrine workup People with TBI can also be vulnerable to sexual assault. You are not alone There are many reasons why relationships are important to all of us. Take some time to think about the positive changes that may come about in your life when you have good relationships. Share your feelings with important people in your life and find ways to tell them how much they mean to you. Used with permission from BrainLine.org, a WETA website at www.BrainLine.org FURTHER READING Read our fact sheets at http://synapse.org.au: • Changes in Relationships • Self Care Strategies for Carers and Families • Acquired Brain Injury - Impact on Carers. 26 / B R I D G E M A G A Z I N E
A bumpy ride Robyn Kefford has braced herself for the challenge of living with her husband’s brain injury
I met my husband in 2009, six years after his car accident which left him with a brain injury. I believed at the time I was fortunate in that I met him after his accident – I wasn’t in the unenviable position of grieving for the loss of what once was, as many I have seen do. However, I’ve slowly discovered that living with a person with a brain injury can and does come with its own grief. The first thing I asked my husband for was a copy of his CT brain report from his accident. I was a registered nurse, and I naively believed that this report would tell me everything I needed to know. The report was NAD – no abnormalities detected. I figured this was great, but also confusing – why would my husband be told he had a brain injury when the visual evidence proved otherwise? I started to doubt what he was telling me. I soon discovered that issues and behaviours of a brain injury are not what can be visualised on a CT scan! It took quite a while for me to discover many of the character traits and nuances that accompany a brain injury, and as I have seen 27 / B R I D G E M A G A Z I N E
over the years, as every individual is different, so too is every brain injury. Some of the issues are endemic, such as poor motivation, inability to initiate and make decisions, and difficulty orientating to unfamiliar surroundings. A poor memory and difficulty concentrating are also common. However, it’s the more subtle and often complicated traits that prove challenging, such as the seeming inability to be empathic to another person and their needs, associated with self-absorption and an obsession with one’s own issues. Disconnectedness is a word which often comes to mind when describing my husband’s relationship to the world and those in his life, and he will agree with this. He has difficulty expressing his emotions and has a “blunted” affect; it’s easy to confuse this as aloofness and apathy. It can be tough to keep reminding myself not to take it personally. Although these characteristics can occur in “normal” people, with a brain injury it is often difficult to pinpoint as it overlaps characteristics which were always present, and can be even
more difficult to manage as a result. Knowledge and information are crucial Although when I met my husband he had lived with his brain injury for six years, he had very little, if any, insight into his condition and the effects it had on himself and particularly others in his life. I believe this was largely due to the fact that many in his life had denied him his autonomy. Even long after he had emerged from the wheelchair, they feared him having an accident or getting into a situation he would struggle to deal with. Over the years we have tried to educate ourselves, and have found that knowledge and information are critical. It is a confusing and difficult condition to understand – being informed is being armed, and wisdom is far superior to ignorance. This can prove to be a hindrance at times as well – I find that once a trait or behaviour is recognised and named, my husband adopts that as “his”, and the accompanying “oh that’s just my brain injury” comment can be frustrating and overwhelming! Referring to the knowledge I’ve built up
Coming to grips with anger After a brain injury, some find themselves becoming incredibly angry at surprisingly small things. They may also find themselves resenting others, or holding on to grievances against others. Family members and partners often find themselves becoming ‘emotional punching bags’ as anger is directed at them, often when they have done nothing to deserve the hostility. Recognise what makes you angry Knowing the ‘triggers’ to your anger is a great start. You can avoid these situations or develop strategies to cope. After a brain injury, you may not realise you are actually angry until you’ve developed a full-blown rage. See if you can learn to detect the early signs while you can still think rationally and act appropriately. Seek reconciliation Angry outbursts tend to alienate others and eventually cause resentment. Asking forgiveness is humbling, but it can free you from emotional slavery. It can save family relationships too. Read up on anger If you know you struggle with anger, take the time to read one of the many good books out there on the subject. Check out the fact sheet on anger at http://synapse.org.au/get-the-facts.aspx and work on strategies to manage your anger. Anger management eliminates any personal reactions this may arouse, and helps me to see the bigger picture and be realistic. Outsiders cannot ‘see’ the brain injury My husband is what you would call a “high functioning” person with a brain injury. This may sound positive, but it is even more disruptive to life and the cause of much isolation and confusion over the years. Why? To outsiders, friends and even family members, my husband seems “normal”. My concerns are often disregarded or ignored, or worse still, I am often told by family members that I “knew what he was like” when I met him. As I remind them, if they have difficulty seeing the aspects of his brain injury, then the same stands for me, and one would need to live with it and him regularly to see them. I am acutely aware of a brain injury being very much an invisible disability. The importance of support I have found that what I have learned about myself, my husband and brain injury has been enormously educational, insightful
and beneficial. I have learned not to take things for granted. I value the importance of patience and understanding. I have learned about impermanence, and how things are constantly changing and evolving. I do not become attached to one particular situation or event as being forever. I have learned about the importance of support networks and not feeling as though you are on your own. I am not afraid to ask for help at times (though this is a particular area which needs to be worked on for me!). I have been influenced by my husband’s own personal strength and resilience in dealing with his various challenges. This has encouraged and inspired me to keep going. I would have preferred my husband to have not been hit by a car in 2003, but I believe everything happens for a reason – perhaps I would not have met him had this not occurred. Our destiny is already mapped out for us to an extent, so rather than fight it I embrace the journey and hold on tight for a bumpy, but hopefully rewarding ride!
Your Brain Injury Association should be able to provide counselling or direct you to other agencies who run anger management courses. Let go of bitterness It is human nature to become angry when we feel our “rights” are being violated. But hanging on to bitterness can lead to lack of sleep, ill health, depression and a negative outlook on life. A person may survive a brain injury but may hamper their recovery and happiness with bitterness toward someone who caused the injury. See conquering your anger as character-building. You can’t choose what happens to you but you can choose how you respond. Choose to control your anger, instead of letting it control you. Remember your anger will often hurt you more than the person it is directed against. Visit http://synapse.org.au to read these fact sheets: • Coping with Conflict • Anger.
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Making the most of memory We can’t restore lost memory capabilities after a brain disorder, but sometimes we can make memory more efficient
There are some techniques that can help the following aspects of memory — getting information into memory more efficiently, storing information more efficiently, and recalling information more efficiently. Getting information into memory more efficiently In order to remember something we must get the information into memory first before it can be stored away. This can be very difficult after a brain injury, especially for someone who has difficulties with attention and concentration. Some simple rules to follow when giving information to someone with memory impairment are: • Concentrate on relevant material that the person wants or needs to remember • Simplify information and written instructions • Reduce the amount of information that has to be remembered and just concentrate on the essentials 29 / B R I D G E M A G A Z I N E
• Divide the information into small chunks • Give the chunks one at a time • Encourage the person to take their time and pay close attention • Ensure that the information has been understood by having the person repeat it back in his or her own words • Encourage the person to make associations by linking the new information to something that is already familiar • Use the little and often rule – it is better to work for a few minutes several times a day than for a longer period once a day • Encourage the person to organise the information – for example, grouping items on a shopping list into distinct categories • Use two or three different methods to improve learning of one piece of information – for example, if you want to teach someone with memory impairment the way to the local shops, you could either draw a map; describe
the way verbally, or accompany the person along the route • Choose a good time to practise – information will be taken in more efficiently when the person is fresh and alert. There are three further main systems used in order to get information into memory efficiently. These are: errorless learning, mnemonics and PQRST. Errorless learning While many people learn from their mistakes, this is not the case with people with memory impairment – they tend to repeat the same mistakes as they cannot remember making them. This can be very frustrating, and a more efficient approach is to prevent them from making mistakes when learning new information. This approach is known as ‘errorless learning’. One way to do this is to guide the person with memory impairments through a task
– e.g. if the person is reading and a difficult word is coming up, say something like, “I see a tricky word in the next sentence so let me know if you need help” • Provide cues, such as an entire answer (e.g. “I think the answer is 22, what do you think?”) or a sentence completion cue (e.g. “The president at the time was Abraham. . . that’s right, Lincoln.” • Ensure large amounts of successful repetitions – this will reinforce the new knowledge and help with retention. Errorless learning can be a difficult technique to use without training. If the person with memory problems is working with a neuropsychologist they will be able to advise as they will be trained to use the method. There is also an excellent tutorial and video on the subject on the Brain Injury Association of New York State’s LEARNet project website at www. projectlearnet.org. Mnemonics Mnemonics are verbal and visual aids to learning, such as sayings, rhymes or drawings, which help us to remember things more easily. For example, the rhyme ‘Thirty days in September. . .’ helps us to remember the number of days in each month. Mnemonics can help people with memory impairments (e.g. one memory-impaired woman learned to remember the name Stephanie as a picture of a step and a knee). However, it is unrealistic to expect them to devise and remember to use them themselves. For this reason, the following guidelines for relatives and carers might help: • Devise the mnemonic yourself and then teach it to the person with memory impairment • Use mnemonics to teach a specific piece of information, such as people’s names or addresses • Take account of individual preferences and styles – not everybody likes the same strategy. several times, and then gradually decrease the amount of help given. Alternatively, provide written instructions to follow and then gradually decrease the amount (e.g. by missing a word out here and there). The following steps can be used as part of an errorless learning program for use with someone with memory impairments: • Adjust your expectations – don’t ask for responses until you are at least 90% sure the person will give a correct response • Make sure the person is completely clear what is expected of them – if they don’t understand what they have to do in the first place then mistakes are inevitable • Complete the task together – saying “let’s do this together” is a better way of starting an activity than “let’s see if you can do this” • Make the task do-able – this can be done by breaking the task down into smaller parts and teaching the parts separately • Anticipate problems and correct in advance
PQRST This is a way of helping yourself to remember something you are reading, such as a newspaper article. This can be very useful for anyone to try as well as people with brain injury. PQRST stands for: • Preview – scan the information to get a general idea of the content • Question – identify some questions you want to be able to answer after you’ve read it and write them down • Read – read the material closely • State – repeat the main points to yourself by stating them in summary form • Test – test your knowledge by seeing if you can answer the questions you wrote down earlier. New information is most likely to be forgotten within a relatively short time after it is learned. The rate of forgetting slows down after this initial period.
Once information has been taken into memory, it helps to practise or rehearse it every so often. This is best done by testing immediately after learning, then testing again after a slight delay, then again after a slightly longer delay and so on. This process is known as ‘expanding rehearsal’. For people with memory impairments, the intervals used should be very short, as immediate memory is usually relatively undamaged so needs to be taken advantage of. You could start by asking the person to repeat the information immediately, then after two seconds, four seconds, eight seconds, etc. Retrieving information more efficiently Often information is stored in memory but retrieving it can be difficult. We have all experienced this as the ‘tip-of-the-tongue’ effect. Retrieving information can be particularly difficult for people with memory impairment after brain injury. However, the following techniques can help: • Provide a cue or prompt, for example, the first letter of a name. • It is much easier to remember something if recalling it in the same location, situation or mood as when the information was learned. In order to avoid the limitations this can place on memory, it is a good idea to learn new information in a variety of situations and settings whenever possible. Conclusion Following the strategies and techniques described should help most people to compensate for memory problems, at least to some degree. However, it must be recognised that they do not offer a cure. In order to help someone with memory impairment, these approaches should be adopted for specific purposes and in a gradual, step-by-step sequence. It is important to try different things to see what the individual finds most suitable. The ideas should be used according to individual preference, and can be adapted in any way that people find suits them. Ideally, they should be enjoyable and can be a shared activity with family and friends. This article is an excerpt from a fact sheet, reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to email@example.com to discuss any issues raised. Visit the website for great resources available for free download. FURTHER READING Visit http://synapse.org.au to read our “Memory Problems” fact sheet.
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