In this issue: THE TRUE COST OF A BRAIN INJURY adjustment, grief & loss the challenges of a carer the undiagnosed
BRIDGE VOLUME 3 - June 2011 ISSN 1448-9856 General Editor: Project Manager: Contributing editors:
Barry Morris Glen Farlow Clare Humphries Anna Petrou
Bang it on and help raise awareness of brain injury
Synapse PO Box 3356 South Brisbane BC 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: email@example.com W: www.braininjury.org.au
If it’s to be then it’s up to me
Bridge is produced by Synapse (formerly Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.
Putting the pieces back together
VISUAL DIFFICULTIES: For those with visual problems, go to 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. The Association 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.
The undiagnosed An ongoing issue despite increased awareness of brain injury
Supported by financial assistance from
03 05 07 09 11 13 15 17 18 19 21 23 24 25 27 28 29 30
What does a brain injury cost? Adjustment, grief & loss Bang on a beanie! It takes a village to raise a child The undiagnosed If it’s to be then it’s up to me The challenges of a carer Coping with caring A sufferer’s advice: get help Memory tips Supporting communication in dementia What if? National Disability Insurance Scheme Assistive technology for a smarter home Fatigue The big picture The world through my eyes Positive behaviour support on the rise
The hidden costs are often the worst An important part of the recovery process Buy a beanie to make a difference Cheryl Koenig’s journey as a carer An ongoing issue in Australia A personal story of courage & determination Helen’s journey as a long-term carer Supporting yourself in the long run A story about foetal alcohol syndrome Remembering to remember Strategies and tips Reflections on what could have happened A better future for anyone with a disability Handy devices from LifeTech Coping with low batteries & tiredness An international take on brain injury A younger carer’s personal story Good news for behavioural issues
bridging THE GAP Jennifer Cullen CEO of Synapse
The true cost of a brain injury According to a 2006 report1 by the World Health Organisation (WHO) one billion people worldwide are affected by Neurological Disorders. Excluding migraines, all of these neurological disorders are types of Acquired Brain Injury (ABI). Statistics show one in twelve Australians are affected by an ABI, a figure much higher than previously thought.1 It is hard to fathom the true cost of a brain injury. For those who are injured, its full emotional impact across their lives is often only fully realised over the years. Like a pebble dropped in a pond, the effects spread throughout other’s lives in terms of family, partners, the workplace, the local community and indeed across the nation. Understandably, the cost is not only emotional. There are also financial costs involved in terms of hospitalisation, rehabilitation, loss of employment, pensions and carer support. Similarily, these costs spread across the nation,
Synapse is funded by Home and Community Care, a joint Commonwealth and State/Territory program providing funding and assistance for Australians in need.
particularly as brain injuries are a major factor in imprisonment, homelessness, mental health issues, and alcohol and other drug dependencies. Less recognised are the costs when families must forego work to care for their loved one, such as loss of productivity and taxation revenue. Many of us are aware of the Productivity Commission’s report, which states that the Australian Government is committed to developing a National Disability Strategy to enhance the quality of life and increase economic and social participation for people with disability and their carers.2 An inquiry will assess the costs, benefits, and feasibility of an approach that will: • provide long-term essential care and support outcomes for each person over a lifetime • cover people with disability not acquired as part of the natural process of ageing. The second scheme that has been presented is for people requiring lifetime care and support for catastrophic injuries, such as major brain or
spinal cord injuries. A no-fault national injury insurance scheme comprising a federation of individual state and territory schemes, would provide fully-funded care and support for all cases of catastrophic injury. It would draw on the best schemes currently operating around Australia. State and territory governments would be the major driver of this national reform (read more on page 22). I encourage you all to examine the Productivity’s Draft Report and Recommendations. We all have a responsibility and opportunity to provide input into the Government’s proposed program to ensure that we do reduce the long-term cost of providing for people with a brain injury and/or those who behaviours who challenge our understanding. ◗◗ 1 Neurological Disorders: public health challenges, World Health Organisation, 2006. 2 www.pc.gov.au/__data/assets/pdf_file/0015/106350/ draft-disability-overview.pdf
AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS QLD QLD AUS NSW VIC TAS WA SA NT
Synapse Inc. 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
Tel: 07 3137 7400 Tel: 07 5574 4311 Tel: 1 800 BRAIN1 Tel: 02 9868 5261 Tel: 03 9845 2950 Tel: 03 6278 7299 Tel: 08 9330 6370 Tel: 08 8217 7600 Tel: 08 8920 4100
Email: firstname.lastname@example.org Email: email@example.com Email: firstname.lastname@example.org Email: email@example.com Email: firstname.lastname@example.org Email: email@example.com Email: firstname.lastname@example.org Email: email@example.com Email: firstname.lastname@example.org
Web: www.synapse.org.au Web: www.headwaygoldcoast.org Web: www.braininjuryaustralia.org.au Web: www.biansw.org.au Web: www.brainlink.org.au Web: www.biat.org.au Web: www.headwest.asn.au Web: www.binsa.org Web: www.somerville.org.au
What does a brain injury cost? Far more than most people realise... Of all the disabilities, Acquired Brain Injury has by far the most potential to devastate lives. For the individual, a brain injury can impact on virtually every aspect of their lives through physical, cognitive, emotional and mental issues. This in turn can wreak havoc for partners and family members, not only in the rehabilitation phase but often in the lifelong role as carers. There are also social and economic costs to take into account in terms of homelessness, crime, imprisonment, violence and the large cost of providing rehabilitation, medical and mental health services. Over one in 12 Australians will acquire a brain injury (WHO 2007) that leaves them with ongoing problems, and yet services are sparse and poorly funded when compared to
other major disabilities. Why? Acquired Brain Injury is incorrectly classified under health and Government guidelines which means limited funding is made available. Contributing to this is the invisible nature of Acquired Brain Injury. A lack of social and medical awareness means that many people have never been diagnosed correctly. This is particularly true if the injury occurred many years ago. Cognitive effects are not as conspicuous as physical disabilities, so people are often labelled as lazy, antisocial, rude or slow. This is far from the reality, that they are attempting to manage a life-changing disability. The lists of effects below are by no means exhaustive, but simply mention some of the more common possible effects of a brain injury. ◗◗
Cognition is the conscious process of the mind by which we are aware of thought and perception, including all aspects of perceiving, thinking and remembering. In general, cognition is knowledge – the way we learn and perceive the world around us. The nature of cognitive problems will vary over time depending on what the person with the injury is doing, where they are, and the area of their brain that was damaged. Some individuals may experience no cognitive problems at all. These cognitive difficulties may exacerbate over time and can be very frustrating as they may affect the person’s ability to learn new things, to work and to be involved socially.
REDUCED SOCIAL SKILLS & COMMUNICATION DIFFICULTIES LACK OF INSIGHT & SELF-AWARENESS MEMORY PROBLEMS REDUCED CONCENTRATION & ATTENTION SLOWED RESPONSES POOR PLANNING, DECISION-MAKING & PROBLEM-SOLVING LACK OF INITIATIVE & MOTIVATION INFLEXIBILITY & RIGID THINKING IRRITABILITY & ANGER MANAGEMENT ISSUES SOCIALLY INAPPROPRIATE BEHAVIOUR SELF-CENTREDNESS DEPENDENCY EMOTIONAL LABILITY PERSEVERATION (Perseveration is the repetition of a particular response, such as a word, phrase, or gesture)
3 / BRIDGE MAGAZINE
Traumatic Brain Injury may result in many different physical issues as the brain controls the majority physical abilities (excluding some reflexive responses). Damage to the brain, therefore, can lead to a host of physical problems, the following being just a few.
LOSS OF TASTE & SMELL DIZZINESS & LOSS OF BALANCE EPILEPSY & SEIZURES FATIGUE POOR COORDINATION HEADACHES VISUAL PROBLEMS CHRONIC PAIN PARALYSIS HEARING PROBLEMS SPASTICITY & MUSCLE WEAKNESS CHANGES IN SENSATION SWALLOWING BOWEL & BLADDER FUNCTION TEMPERATURE REGULATION
mental health ISSUES
There is a higher risk of developing mental health conditions such as adjustment disorders, depression, anxiety and drug and alcohol addictions after a brain injury. The reasons for this include issues with grief and loss, adjustment to disability, pre-injury personality traits and strengths, coping skills and level of social support. Mental health issues include:
DEPRESSION & RISK OF SUICIDE OBSESSIVE COMPULSIVE DISORDER SCHIZOPHRENIA BIPOLAR DISORDER POST-TRAUMATIC STRESS DISORDER ANXIETY DISORDERS & PANIC ATTACKS
SOCIAL & ECONOMIC COSTS
These costs tend to be hidden, as there is little awareness of Acquired Brain Injury’s strong links with homelessness, crime, drug use and violence.
HOMELESSNESS JUSTICE SYSTEM & IMPRISONMENT DIVORCE & RELATIONSHIP BREAKDOWN LOSS OF FRIENDS LOSS OF FAMILY SUPPORT UNEMPLOYMENT / DISABILITY PAYMENTS MEDICAL & REHABILITATION COSTS DEPENDENCY ON ALCOHOL & OTHER DRUGS DOMESTIC VIOLENCE & ASSAULT
4 / BRIDGE MAGAZINE
Get the rehab you need
Adjustment, grief and loss
Rehabilitation is crucial to recovery from a brain injury, using both your body’s natural healing abilities and your brain’s ability to relearn to aid recovery. Rehabilitation also means learning new ways to compensate for abilities that have permanently changed due to brain injury.
The true emotional cost of a brain injury often only emerges many months later
You will want the best information to make well informed decisions about the services you receive. Here are some guidelines toward getting the rehabilitation you need. Speak up! You know your needs best. Your rehab team needs to hear your opinions and concerns. If you have trouble with communication find someone you trust to speak for you. Ask questions. For example, if someone suggests “remediation of anterograde amnesia due to frontotemporal lesions”, ask for a clear explanation. Insist that they give you the details you need. Check the experience of others. If you are a member of a support group, ask them about their experiences. If you aren’t a member, this might be a good time to join one. Knowledge is power, and sharing your experiences with others empowers everyone. Get it in writing. Whether you have memory problems or a legal case coming up, put everything in writing. Keep copies of all your letters. Record and date your phone calls. Ask people for permission to record phone calls if you think this is needed. Go for it! People with a brain injury often say rehabilitation is the biggest challenge of their lives. While you may never get back to ‘normal’, the good news is there is no limit to the extent of your rehabilitation. How far you get depends on how much you put in. Even if improvement is painfully slow, remember progress is better than staying where you are. Rehabilitation may the hardest thing you’ve ever done but look at it positively. As Ronald E. Osborn said, “Undertake something that is difficult; it will do you good. Unless you try to do something beyond what you have already mastered, you never grow.” ◗◗
5 / BRIDGE MAGAZINE
Adjustment is the ability to adapt to change. When we choose to change something about ourselves, or about our lifestyle, the adjustments we make to allow that change are usually viewed in a fairly positive light. Changes that are forced upon an individual, however, are often perceived as losses usually due to a sense of loss of control over one’s life. Following an Acquired Brain Injury (ABI), people may experience many changes or losses of previous abilities which may vary from mild to severe in their nature. People may experience changes in their personality, changes of a physical, emotional, behavioural, or cognitive nature, and changes to how or where they live their lives. For example, a person who has always driven their own car may now need to use public transport. Even though they remain independent with transportation without the use of a car this change may be perceived as a loss because they can no longer drive their own car independently. Adjustment to loss will not only affect the individual with the brain injury but also those who are close to them, such as partners, family, and friends. Those close to the person with a brain injury may also experience loss in a number of ways. They may experience loss of a friend, loss of independence and freedom, or loss of intimacy. Some may lose marriages, jobs, houses, income and their social network.
Adjustment to loss generally involves a grieving process. Grieving is an individual and mostly private experience, and at times may seem very lonely. Individuals who have a brain injury, as well as those close to them, may not appear to have experienced loss at all. In fact, they are often told that they “are lucky to be alive”. Sometimes these types of comments make the person experiencing loss feel all the more alone. There are many emotions involved in the adjustment and grieving process. These can include shock, disbelief, denial, anger, resentment, guilt, despair, helplessness, hopelessness, depression, sadness and acceptance. Not everyone will experience all of these emotions, nor do they occur in any predictable way. The way a person experiences these feelings and their sense of loss is associated with how the individual perceives themselves and the world around them. Strategies for managing personal loss • Be willing to share your personal thoughts on these issues with someone close that you can trust and that you feel comfortable with. • Write a story or journal about your own loss and how it fits in with your world view. Explore your world view and what is important to you. Explore your life expectations and goals. • Explore other ways to achieve your goals through problem solving. You may need to
Tip of your tongue? “Damn, it’s on the tip of my tongue . . .”
develop compensatory strategies to help you achieve your goals. You may need to enlist the help of specialised services. • Identify your fears, and if you feel comfortable, start to explore them one by one. • Identify coping strategies that work for you. Remember, what makes someone else feel better won’t necessarily make you feel better. • Seek counselling from a Neuropsychologist or a psychologist or counsellor with brain injury expertise. • Seek support from organisations that specialise in brain injury. Strategies for families, friends and carers to help others through the process of loss • Listen to the person experiencing the loss. • Reflect what the person is saying to you, without projecting your own feelings onto them • Identify and legitimise all of the feelings. Try to identify all of the feelings the person is experiencing by putting a label to them, for example regret, sadness, hopelessness. If you can help the person recognise why they have these feelings. For example simple things like “Its understandable that you are feeling frustrated, you would like to be able to drive.” • Interpret ‘normal’ behaviour; for example “It seems normal to feel sad about losing your skills to drive”. • Allow for individual differences.
• Allow time for the person to grieve. • Help the person to problem solve themselves. For example “So you are feeling useless because you are unable to play soccer with your son, how can you feel useful in other ways?” or “How can you go about this in another way?” For example they can play other games. • Avoid platitudes like “You’re lucky to be alive” and “I know how you feel”. • Don’t feel bad about expressing your own needs. The more clearly you can define them the better you can work out ways to fulfil them. • Look after your own needs for fun, peace and quiet, for company and for a life of your own. It will make you a better carer, friend, family member or partner. • Seek support from organisations that specialise in Acquired Brain Injury. ◗◗ Acknowledgement: Information provided has been derived from Schultz and Bruce (2001) and a presentation by Judith Murray on Grief and Loss (2003). This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ The Acquired Brain Injury Outreach Service is a rehabilitation service assisting people with Acquired Brain Injury in Queensland, their families, and carers. Ring ABIOS on 07 3406 2311 or email email@example.com
Word-finding is a common, and often annoying, problem. Many people experience this to some degree after a brain injury. They may talk normally; speech flows evenly and it’s easy to understand. But they’ll have this very odd problem — they’ll know the word they want to say but just can’t come up with it. Professionals call this anomia which means “can’t name”. Everyone has an occasional anomia, but it is frequent after a brain injury. It is particularly annoying if you are dealing with people all day long. You can develop poor self-esteem because you’re just not sure of what you’re saying anymore. A variation on this problem is that you say the wrong word. Instead of saying, “pass me the spoon”, you might say “pass me the noon.” Or, instead of using a similar sounding word, you may use an entirely wrong word. Instead of “pass me the spoon,” you may say, “pass me the car.” You may not even recognise that you said the wrong word until people point it out to you. Speech and language pathologists are professionals who work with these types of issues. They can teach you techniques to manage your word finding difficulties. For example, you can use a technique called circumlocution. Basically, you “talk around” the word. If you can’t come up with the word “telephone,” you might say “you dial it, you can put a coin in it, you can call people.” People eventually get what you are trying to say. Another technique that people sometimes use is to go through the alphabet and try to get the first letter of the word. Or you can visualise spelling the word — picture a blackboard and try to “see” someone writing the word on the blackboard. Then read the word off the blackboard. Depending on the type of injury you have, one of these techniques may be helpful to you. Seeing a speech and language pathologist or other brain injury specialists is a good way to get help for this problem. ◗◗
6 / BRIDGE MAGAZINE
A Fun, Informative Awareness Campaign about ABI
Whatâ€™s with the beanie? 7 / BRIDGE MAGAZINE
Let’s put our heads together to make BANGONABEANIE.COM.AU a resounding success It’s time to transform an invisible disability into a very visible one. The BANGONABEANIE Campaign will strive to encourage people to buy a blue-branded beanie to support Brain Injury Awareness Week. By doing so, they will actively show support for anyone they know – loved ones, friends and colleagues – who are living with an Acquired Brain Injury (ABI). Profits will go toward improving essential services for people living with ABI, including support during the most crucial stage of recovery, the post-injury period. We invite you to take part in this exciting new program. Unfortunately it is often the most vulnerable people in the community who are affected by ABI, 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. when we’ll bang it on The BANGONABEANIE promotion will be launched during the lead-up to Brain Injury Awareness week from the 15th to 21st August 2011. why a beanie? We wanted to establish a relevant, fun and easy thing to do that appeals to all age groups and people who are receptive to good causes. The message: buy a beanie and wear it in the lead-up and during Brain Injury Awareness week. The initiative is based on the rationale that: • Community awareness of ABI is poor • Many people are living with ABI – more than what is currently being reported (the undiagnosed and misdiagnosed) • ABI is presently invisible to too many people, so diagnosis and policy must be based on accurate statistics (not the current underestimated statistics) • There are insufficient services and supports. Aims & objectives • Increase awareness of ABI in Queensland by 100%. This will be measured by the quantity and quality of coverage achieved in the media, through the degree of increased interaction via online social networking and email enquiries. • Raise funds and establish partnerships to help deliver essential services. This will be measured by the quantity of beanies sold and donations via the website. • Establish a lasting network of partners willing to support this vital initiative and watch ABI awareness grow from year to year. With your help, we intend to build on the initiative,
measure and monitor its success, learn from the experience, refine it and improve it from year to year. heads we intend to target The Queensland general public, particularly: • Primary and high school aged students • Generation Y (18 to 25 years) • Generation X (25 to 45 years) • Baby boomers (46 to 64 years) • Aboriginal and Torres Strait Islander communities in Queensland. Specifically we will target schools, workplaces, Queensland libraries, politicians, organisations, individuals and the media. Because of a limited budget, in 2011 Queenslanders will be targeted with the pilot; however we are hopeful that we can achieve some reach nationally. We will look forward to targeting an international audience as interest grows (by virtue of having an online presence). core messages we’d like people to get stuck in their head • Bang on a beanie • It’s about Brain Injury Awareness • Buying a beanie shows you care • Wear your beanie during Brain Injury Awareness Week • People who live with ABI are our family members, students, colleagues, and neighbours, they contribute to our communities, and they are people — just like us • Share your personal beanie story on Facebook • Understand the facts about ABI • It’s OK to talk about brain injury • Recovery from ABI is possible, with support from peers and family members, treatment and understanding. keeping it simple We need to avoid stigma and the ‘too-hard basket’. It’s vital we keep the beanie concept fun and bring the topic of brain injury out in the open. The aim will be to keep messages simple, and easily digested. like to get involved? Getting a beanie shows your support and funds initiatives. We want people to go to the website and read about ABI, so please tell others about it. Take a photo of yourself and your beanie and share it on Facebook (there’s a link on the website). You can also share your personal stories on the Facebook page. There are more tips at www.bangonabeanie.com.au on how to get involved!
Get your beanies, t-shirts, free posters and promotional packs from BANGONABEANIE.COM.AU
8 / BRIDGE MAGAZINE
It takes a village to raise a child This rings even truer for someone who has to start over after having lost everything about their sense of self; child or adult. Try to imagine what it must be like for someone going about their normal life to suddenly open their eyes after being in a coma for weeks or even months! You can’t speak, you can’t move, you don’t know where you are, how you got here, and sometimes not even who you are. You are trapped inside a battered and broken body, and can’t respond to your loved one’s pleas or doctor’s questions. The thought is frightening isn’t it? In reality, this is the situation for tens of thousands of men, women and children across this country every year who manage an Acquired Brain Injury
9 / BRIDGE MAGAZINE
(ABI) from incidents such as road accidents, stroke, alcohol or drug-related cell damage, hypoxic episodes such as near drowning, or cardiac arrest. Brain injury has a low profile, and could be said to be the most hidden of all disabilities. Is it the social stigma attached? Or just a lack of understanding? On top of the more obvious physical and cognitive challenges, one of the most frustrating aspects of ABI is that it can leave you with little social contact, support and activity – all the things that make life worthwhile! This is why we need to dramatically
increase community awareness! As a people that cares about those less fortunate, we desperately need to optimise the opportunities for social and economic inclusion. We need to develop acceptance and understanding of the valuable contribution people with an ABI can still make in our society, if given the chance. Recovery from an ABI is not so different from Olympic athletes training six hours a day, working through daily pain, family sacrifice and financial strain for years on end. People with an ABI, however, are not so fortunate in
receiving the support an Olympic athlete gets. Evidence now suggests that recovery can take place five years or more after an accident or incident. This requires intensive rehabilitation, a self-drive like no other, and most of all, family and community support. How do I know this? My son is a walking, talking message of what persistence and sheer determination can achieve. His story of strength and courage to recover after a horrific accident has been described by many as truly inspirational. At 12 years of age, Jonathan was a high achiever at school, sport, and musically gifted with the piano, guitar and clarinet. Hit by a car as he crossed the road not far from his home, he was given very little chance of survival. When he did miraculously pull through, doctors predicted that due to his extremely severe traumatic brain injury he would most likely never walk, talk or even eat again. Paper Cranes tells the story of Jonathan’s valour in the face of adversity and our family’s relentless drive to help him defy these ominous predictions. The narrative, as told by myself, his mother, outlines an arduous and desperate search for knowledge in the area of recovery from traumatic brain injury. It describes in detail what enabled Jonathan to achieve some amazing results, such as his return to mainstream school to complete his Higher School Certificate with his peers; followed by passing a TAFE course and obtaining his Retail Certificate II. And now, 14 years since his horrific accident, he is currently learning to drive; he can not only walk well, but can run; snow ski; swim laps; play tennis and astound many with his poignant piano skills. All this as well as working five days a week in four part-time jobs. The decision to go public with our story was not an easy one. It meant exposing our very private lives, everyday struggles and emotions. But the one thing that drove me to write about our journey was the hope that it would inspire and motivate others, in all walks of life. And to date, the overwhelming positive feedback I have received has made that decision one of the best decisions of my life! The process of creating meaning from suffering through artistic expression in my writing has also had significant personal benefits. My writing ultimately guided me to a special place of understanding and unconditional acceptance of the person my son has now become, and enabled me to relinquish my nostalgic attachment to the ‘perfect’ life we once shared as a family. It is precisely this understanding and acceptance that I want to share with the world – I want to change the existing stereotypes, break down the barriers that currently exist, and create more meaning and purpose for this underestimated group of society.
cheryl koenig’s top 10 tips on maximising recovery • Function and mobility are important signs of recovery, but the ultimate marker of recovery is not ‘physical’ or ‘cognitive’ achievement, but rather PARTICIPATION within the community. • ABI can be likened to an earthquake that shakes the very foundations of the family structure, so families need a united front and cohesive team-work to help build structure and routines in the life of their loved one. • There is no one blueprint for rebuilding the shattered structure – however it is essential that one person take up the ‘foreman’ role, whilst others fall into key support roles within the team. • Adopt a ‘team-care’ focus — insist on being part of the multidisciplinary outpatient/hospital team, and get involved in therapy and decision making to help create emotional stability. • Maintain a united front by adjusting to the ever-evolving family dynamic. • Developing a daily routine is essential for the person with ABI and the supporting family. • Rebuilding a new life takes time – becoming proactive with therapy, or later within the community, helps the family/carer move into a more purposeful caring role. • Maintaining optimism (and a sense of humour) is very important. • Social isolation can be a devastating spiral, and hard to pull back from. We supported our son in feeling included in mainstream society by integrating him back into mainstream school, as many community activities as possible, and eventually work. • To reach the ultimate marker of ‘PARTICIPATION’; we are all responsible for raising profile of people with ABI, which can only be achieved through more awareness campaigns like BANGONABEANIE! These are just some of the tips that Cheryl shares in her book Paper Cranes, the true story of an ordinary woman, and her extraordinary strength that allowed her to survive the unthinkable and help her young son regain his life. Cheryl has now written three books about her experiences as a carer. There’s Always Hope... Just Alter the Dreams, and its sequel The Courage to Care, look at the personal journeys of people recovering from, and living with, traumatic brain injury. Both books tap into the rich resource of strategies, anecdotes, stories, and techniques used to still live their lives in a positive way. Cheryl was named 2009 NSW Woman of the Year for her role as a carer, raising awareness of brain injury, and volunteer work to improve brain injury services.” Visit Cheryl’s website at www.cherylkoenig.com
Similar to people with this often hidden disability that we are so reluctant to publicly talk about, carers of people who have sustained an ABI are also one of the most invisible, vulnerable and undervalued sectors of society. As a carer myself, I can personally relate to the constant demands of caring and the many changes in family life following an ABI. The role of a carer is, in my opinion, the most important job in the world. There is nothing more important than enhancing the health and happiness of someone you love.
International Neuropsychological Conference on Brain Injury in Brazil. Mine was the only paper accepted by this symposium from carers around the world! This personal milestone for me as a proactive carer was celebrated upon my return with a cocktail reception hosted by the then NSW Minister for Ageing and Disability, Kristina Keneally. My message is a simple one; Never underestimate your potential to beat the odds – it’s not important where you finish; but it is important that you try! ◗◗
The message that shines through our story is hope — the book was aptly named Paper Cranes as over 1000 paper cranes were made and sent into the hospital from his classmates. It demonstrates that with the omnipotent force of persistence, determination, family love and community support, any challenge can be faced and overcome. Science has its important role to play, but as this story demonstrates, human development cannot always be accurately determined by science, nor can potential be predicted, or spirit measured. Currently I volunteer much of my free time to improve government policy and services in the area of brain injury, and have even presented a paper on ‘Family and Carer Issues’ at an
It is with the greatest pleasure that Synapse and its partners announce that Cheryl Koenig and Jonathan have agreed to become Ambassadors of the bangonabeanie.com.au campaign. 10 / B R I D G E M A G A Z I N E
The Undiagnosed Despite increasing awareness of brain injury, there are still many cases that are misdiagnosed or undiagnosed. Although public awareness of Acquired Brain Injury leaves much to be desired, at least within the health professions there is a vast improvement. Some time ago people who reported ongoing cognitive problems after a blow to the head were often ignored as doctors believed there had to be a period of unconsciousness for any lasting injury to occur. Thankfully most health professions are now much better informed, and will often carefully monitor patients until they are fairly sure a brain injury has not occurred. Misdiagnosis, however, is still a possibility.
War veterans Many soldiers have acquired brain injuries as a result of improvised explosive devices (IEDs) in recent wars. Often there is little concern about a brain injury as medics are treating all the other physical injuries that have occurred. There is a growing awareness of IEDS causing a brain injury, but in the past many returning veterans slipped through the net, especially when their symptoms may have been diagnosed as Post-traumatic Stress Disorder. domestic violence In Domestic Violence cases ABI assessments may not occur due to the critical nature of the situation. Stress, anxiety and turmoil can continue for months after a blow to the head, so the symptoms of a brain injury can often be hidden.
11 / B R I D G E M A G A Z I N E
dual diagnosis Dual Diagnosis is a common occurrence in people with ABI. Put simply, this is when two disorders are affecting an individual at the same time. This could be someone presenting with a brain injury along with depression, anxiety, Post-traumatic Stress Disorder, or a dependency on alcohol or other drugs. As with war veterans, treatment in crisis situations may mean that a health professional may not even be looking for the underlying symptoms of a brain injury. Even when they are, diagnosis can be difficult as the symptoms of a brain injury can often mimic symptoms of Mental Health issues resulting in an incorrect or incomplete diagnosis.
indigenous communities Recent research suggests that brain injuries may be far more prevalent in some Aboriginal and Torres Strait Islander communities than realised. The major causes are domestic violence, dependency on alcohol and other drugs, and fetal alcohol syndrome. Again, misdiagnosis may occur because intervention is focussed on substance use, or treating physical injuries. Complicating this is the appalling lack of services to many Aboriginal and Torres Strait Islander communities, meaning that services either don’t exist, or are overstretched, and so many brain injuries go undiagnosed. The statistics for Aboriginal and Torres Strait Islanders are clear: • Brain injury from assault was 21 times higher than in non Aboriginal and Torres Strait Islanders.1 • Females were 69 times more likely to be injured than in non Aboriginal and Torres Strait Islanders1 • In 2002, one in six Aboriginal and Torres Strait Islanders aged 15 years or over reported risky/high risk alcohol consumption in the last 12 months.2
lack of healthcare services In the developing world, there are many regions that either have no healthcare services, or families in poverty are unable to afford services. There are no statistics available in these situations, but one can only wonder at the numbers of people worldwide who are struggling with the symptoms of a brain injury, yet not aware that they have one. This is particularly salient when taking in to account the recent disasters occurring around the world. ◗◗ FOOTNOTES 1 “Hospitalisation for head injury due to assault among Indigenous and non-Indigenous Australians”, Lisa M Jamieson, James E. Harrison and Jesia G. Berry, Medical Journal of Australia, 2008; 188 (10): 576-579. 2 The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander Peoples, Australian Bureau of Statistics, 2005.
12 / B R I D G E M A G A Z I N E
If it’s to be then it’s up to me A story of determination, courage and putting the pieces back together after a brain injury
Donna has come a long way since coming close to death when in hospital. Anna Petrou from Synapse recently interviewed Donna about her long journey since acquiring her brain injury.
How did you acquire your brain injury? I’d been injecting drugs on and off for about eight years. I did six months in drug rehab at the Gold Coast but just sat there and didn’t listen to what the counsellors were telling me. I moved through different jobs and ended up with pneumonia and didn’t know how sick I was. I went out and scored for my 29th birthday and came home to shoot up. I must have fallen backwards and hit my head in the edge off my bed and knocked myself out. I must have vomited and it got caught in my airways because of the pneumonia. This limited air to my brain and so I got a hypoxic Acquired Brain Injury. If you could turn back time what would you do differently? That is an easy question to answer. Not take drugs in the first place, and I’d surround myself with more good friends. What have been your challenges along your road to recovery? Learning to walk, still haven’t cracked that one but I am getting close. Another big one in the early days was learning to talk again, and anyone who knows me knows that I like to talk! I also struggle with the fact that I can not 13 / B R I D G E M A G A Z I N E
think as quick on my feet as I use to, and the frustration and depression because I appear the same as everyone else except for my wheelchair. Making new friends who don’t judge you for your disability but love you for who you are is another challenge. Having a disability can be very lonely. What is the biggest issue facing people living with a brain injury? Acceptance from the general community and the ignorance that comes along with an Acquired Brain Injury (ABI). Transport and general access in the community is another, especially if you have trouble walking or are in a wheelchair. If you don’t receive a payout from an accident, the general cost of having a disability, let alone an ABI, is high. For example wheelchairs are not cheap, and if you depend on one for your mobility, as I do, and it needs repairs then that’s very stressful. Meeting a potential new partner if you are not already in a relationship is next to nil chance. Even being in some sort of social group becomes difficult after ABI. Does a brain injury affect family and personal relationships? My relationship with my family, especially my father, has had its ups and downs but he has always been there when I need him. He is still wary of things I do and how much money I spend, but that is understandable considering how I got my brain injury. All in all my family
is supportive, and it helps that my stepmother and stepsister are nurses. When I was in hospital my stepmother was able to ask the appropriate medical questions and give my father the correct information. How important are positive influences in your life? Extremely important. I need positivity around me because I have suffered all my adult life from various forms of depression. Positive influences keep me in a happy frame of mind. My best friend Katrina is a positive person and is always there for me. She’s always encouraging, she helps me understand things when I am confused or frustrated, and even helps me with some physical aspects of my recovery like swimming, exercises, and getting me to walk by holding on to one of her fingers. Another friend lives interstate and her daughter has a traumatic brain injury. So she understands brain injuries and the frustrations I face very well and is always there with a supportive word. The person who drives me the hardest and always encourages my positive attitude is my personal trainer. He will not allow me in the gym if I say I can’t do something or if I show the smallest bit of negativity. Is community access important to you? Yes! I live by myself, so I do most of the grocery shopping and other domestic activities myself. I don’t drive and can’t walk as yet, so my manual wheelchair gets me to the same places as
an able-bodied person. The only form of public transport I use, but not on a regular basis, is the river ferries and the trains. I have never tried the buses because I need a low-floor bus and those are not on every route.
existing system for people with an ABI? Make more funding available for rehabilitation services. More in-depth training for people who deal with people who have an ABI, particularly around memory problems.
Is it expensive to get around when you are using a wheelchair? It’s very expensive, simply because I am so dependent on my wheelchair and I have to catch taxis everywhere. I spend about 30% of my income on getting around. Some weeks it’s a lot more, when my wheelchair breaks down or needs a service e.g. new tyres, brakes or the frame fixed. The Government will only fund a new wheelchair every four years and you have to pay at least 40% of that.
What are the most annoying things that people living with an ABI must deal with? People just assume because I am in a wheelchair that I am helpless and hopeless. This could not be further from the truth, people forget your brain might not work to full capacity, but other parts of your body take over from those that don’t work properly. I am very far from being stupid. I now think in a different way, and am more sympathetic, understanding and my emotional intelligence has been broadened. People often see me as the fat girl in the wheelchair; they don’t see my other qualities such as my quick-witted humour, compassion, and ability to think outside the square.
What would help fix this problem? More government funding both Federal as well as State governments. If you could change anything about the world what would it be? And how? This is like a Miss Universe contestant question! I would like there to be no more injuries, accidents or birth mishaps that leave people with a disability. But I can’t change any of this because only God or the higher power that rules the universe has the power to do that. But if everyone, including me, thought more positively that would be a start. What do you count as some of your achievements? Someone said to me recently that “You are very stubborn, aren’t you?” I was able to wake up in hospital and not die because I’m stubborn. I came close to having the machines keeping me alive turned off, but I knew I wasn’t ready to die so I’ve kept going. Other achievements are the ability to live by myself and function, the ability to write things like this, and to participate as a member of the Synapse Board. I wrote that application myself, and was awarded Board Membership on my own merits. I attend the All 4 Fitness gym three times a week, and the fantastic trainers — especially the Head trainer Zenon Winters — has enabled me to stand for about three to four minutes without falling down, and walking is next to come. These trainers especially Zenon put up with a lot of self-doubt, verbal abuse and emotions from me but they are all are willing to persist with my behaviours (although these behaviours are very minimal for someone with a brain injury). Last year I did the best thing yet — I walked all 113 stairs at the Kangaroo Point Cliffs! For four years now I’ve been doing annual talks about living with a brain injury to the psychology students at QUT Kelvin Grove. It’s one of the highlights of my year. How could policymakers improve the
What advice would you give someone going through rehabilitation? Soak up as much as possible while in the hospital/nursing home system. There may be things that might take you years to learn but that is okay as long as you learn something every month. Listen to your therapists; they know what they are talking about. If you need to cry, cry. If you need to get frustrated or angry then do so. But let the nursing staff, allied health professionals and doctors, and most important of all your family and friends, help you. Last of all don’t expect too much of yourself. You have just had a life-changing injury, cut yourself some slack and allow yourself time to heal. You have a journey that you will be on for the rest of your life! What advice would give to their family? Seek various opinions other than the immediate health professionals, and don’t always believe what you are told first up. Always think outside the standard path of medical professionals and get a second, third or even fourth opinion. Never give up. As your loved one gets more understanding of their injury give them the chance to voice their opinions, and don’t dismiss them just because they aren’t the person they used to be. Compassion and understanding starts at home or with family and close friends, so those people will be the ones who help you on your road to recovery. Bear in mind it might be three steps forward then two steps back, and this is a journey that is going to take the rest of your life so be patient. What are your goals for the future? To be able to walk and not use my wheelchair. — I don’t mind if I have to use an elbow crutch or a walking stick. I’d like to drive again too. But first I have to lose a bit of weight. I would
like to be in a relationship, or be married with a child. I would also like to find an enjoyable part-time job in the disability industry, or helping people in some way. What role does BIAQ/Synapse have in your life? One of my greatest achievements so far is being a proud Board Member of Synapse. I can bring the perspective of someone with a brain injury to the Board of Management and therefore have a say in making policies. The staff are so supportive, every time I face an emotional hurdle I know I can ring someone and they will listen. They are a big part of my life. What other volunteer work do you do? I work twice a week for about four hours a day at The Morningside State School, helping the children in the unit for the students that are having trouble keeping up in class, but currently I am not doing this because I am waiting for my Blue Card to be renewed. Is it hard for people with a disability to date/meet people? It’s hard for those of us with an obvious disability as people see the wheelchair first not the person who is in it. They say a brain injury is the invisible disability which would be the case for me except for the wheelchair. My best friend often comments that if it wasn’t for my wheelchair she would not know I have an ABI, which is the biggest compliment of all. I haven’t dated since I got my injury. I just don’t frequent the pubs, clubs and all the usual places you’d meet someone. I would like to find Mr Right but I’m on the shy side, knowing it’s hard to meet people who see beyond the wheelchair to the nice, funny, generous person I am. I don’t honestly see a way this can be improved. It’s hard enough to find friends or partners when you are able-bodied, let alone when you have a disability. What message would you send to the community about having a brain injury? A brain injury is very traumatic, but with patience, time and determination your life can improve. You will never be the same person as before, but it is your chance to start again. Hopefully you have a supportive family and friends to help you will get through this. It is a long hard road, but if you are determined and motivated things can improve. Stay positive, focussed and grab every opportunity that comes your way, and don’t live your life in fear that will hold you back like I have for the last five years. I am only now coming into my own realising my potential. Never give up on yourself. Someone very wise once said to me, “If it is to be it is up to me!” I now try to keep this uppermost in my thoughts and often gets me through hard times. If you can grab something like that and it works for you than run with it. ◗◗ 14 / B R I D G E M A G A Z I N E
The challenges of a carer Helen Bawden reflects on 25 years of caring for her husband after his brain injury
There is a saying - Life begins at 40. Three months after I turned 40, my new life began. In 1986 my husband had a serious accident whilst pursuing a life-long hobby of photographing steam engines and was diagnosed with an Acquired Brain Injury (ABI). I was unprepared as to what lay ahead, and the challenge of becoming a carer was an unknown quantity. Previously, I had confronted many challenges and conquered them; but here I was at the grand age of 40, facing the most daunting challenge of all — two teenage girls and a husband who was now like another child. Barry spent 15 months in Penrose House, the Head Injury Wing at Baillie Henderson Hospital in Toowoomba. As he made improvements, he became very frustrated and confined like a caged animal, so I brought him home to live. My first reaction was that I had dug a hole and was buried in it — trapped — never to see daylight again. That day my most daunting, unknown challenge began. Barry was an Army Officer and flying instructor before his accident and these regimented practices remained as part of his muddled life. In the early days life was quite chaotic, trying to keep within Barry’s routine scopes and being a “Mum’s Taxi” for the girls, whose lives still had to be considered. Barry couldn’t understand that there were four people living in the house who needed a life. It is common for people with a brain injury to have limited insight into the feelings and needs of others. Slowly a
15 / B R I D G E M A G A Z I N E
routine emerged; but I felt constantly stretched to the limits, and at times the loneliness was overpowering. A changed personality For the carer and the immediate family it requires much patience and understanding to cope with mood swings, lack of short-term memory, unbelievable obsessions and a total personality change, and carers often become very isolated. In the first few weeks I received a lot of visitors and support but friends and family dropped by the wayside over time. They had come to realise that Barry was not the man that he was before the accident, even though he looked the same. Deep down though, a brain injury does not affect intelligence. The person’s knowledge is locked away, like a computer that cannot be accessed without the right code. In Barry’s case, sometimes the trigger of a few words, a picture, or a face can be the code to open up a Pandora’s box of memories for a few hours, and I need to be a very switched-on cookie to be able to answer all his questions. Of course they usually relate to something that happened 20 or 30 or 40 years ago, and my poor old brain cells have trouble remembering that far back sometimes. Barry then gets frustrated with me, because I cannot remember what he wants me to, or I cannot understand what he is trying to relate to me. Twenty-five years down the track my encyclopedia brain still works overtime, but I must admit my age must be showing because
there are times my “computer” has trouble booting up! Memory loss Unfortunately Barry does not retain most of what he is told, and by the next day it is usually all forgotten again. His short-term memory loss is becoming more pronounced as the years go by. Mind you, if he is asked anything in regards to airplanes or steam engines, he shows no hesitation and is spot on with his answers. These interests are stored in his very long-term memory bank, as they have been his lifelong hobbies since childhood. Barry is a volunteer tour guide at the Museum of Australian Army Flying at Oakey, and tourists have no idea that he has a brain injury. Through routine, repetition and his retention of longterm memory knowledge, he has been able to make a life for himself within the museum environment. By now you are probably thinking “Gee she is lucky”. Yes, I am lucky and I know it. I am extremely humbled when I hear of the atrocities that some carers have to cope with. I think life has got easier for me — or maybe after all these years I am getting more adapted to coping with Barry and being stuck in a rut of a life — but there are still many down sides. Barry has no sense of taste, and doesn’t know what different foods are called. I have to make sure all food is fresh and safe in the kitchen. He has a habit of turning the kettle on and forgetting about it, so we have an electric one
with an automatic cut-off. He has no sense of smell, so there are more safety issues and I have smoke detectors in the house in case of fire. His time management skills are non-existent; he gets part way through doing something and then becomes sidetracked, starts doing something else, and it is hours or days before he gets back to what he was originally doing. When we are going for an appointment, I have learned to tell him we are leaving at least half an hour before we are due to go — and we still run late. Because people speak so quickly on TV, in meetings and in group situations, Barry only picks up every second or third word so he misses a lot of what is being said. I might add this is extremely frustrating for me when we are watching TV because he keeps asking me what is being said, or what does a word mean. By the time I’ve answered I’ve missed critical parts of the show. He also has an annoying habit of flipping through the channels during ads, and by the time he gets back to the channel we were watching, it is well into the next scene. He becomes very upset with me when he thinks that he has not been told something. Unfortunately this has developed into such an obsession that he believes that I never tell him what is going on. I make a point now of making sure that he has written it down when there is something that I know he has missed or not understood. He is not deaf, just slow to pick up dialogue. He has little comprehension of the value of money and asks me for “little bits” when he wants any. I think he imagines my purse is a bottomless pit. Obsessions Barry also has numerous neatness obsessions around the house, which took me a long time to get used to as before his accident he was such an untidy man. We must have the neatest rubbish bin and clothes basket in Oakey. I’ll bet your knives, forks and spoons aren’t in nice neat piles like ours are in the cutlery draw. Plastic shopping bags? They are folded into nice neat little squares. I’ll bet your newspaper isn’t taken out of its plastic wrapper of a morning and with incredible precision ends up with a neat crease down the middle of each page before you get to read it — to name just a few. What happens to the plastic wrapper? It is folded into a neat square and stored in nice neat little piles. The biggest down side of my life of course is that I have lost my best friend, my mate and my lover. I am still married to the man who looks like the man I married but he is no longer that person. A split personality Who folks see outside the house and whom the carer lives with can be two totally different personalities after a brain injury. Consequently,
helen’s tips on staying sane as a carer after 25 years experience • • • • • • • •
Maintain a good nourishing diet to keep healthy. Develop ways of managing crisis and challenging situations. Develop positive intervention when behavioural incidents occur, especially when away from home. Take time for YOU — even if only a short time each day allows. Learn to “switch off” with exercising, reading a book or watch a favourite TV program. Join a Carers Support Group and find out what services are available to help you in your role as a carer. Maintain contact with other carers for your support, and in return it helps to support them. Don’t bottle up your fears and inadequacies. Carers Queensland can put you in touch with others in like situations through their mentoring program. • When you find you are on a downer seek help. There is help available. Don’t let yourself be dragged down by negative thoughts. It is imperative that you keep your mental health as healthy as your physical health. For more information visit www.synapse.org.au and read our fact sheets for carers.
as a carer, I find it difficult to discuss my life with an outsider, and after 25 years still do, as they find it hard to comprehend, after seeing how apparently normal and charming Barry appears to them. The fact is people with a brain injury often have this ability to be charming to strangers, but treat their immediate family and primary caregiver with utter disdain. The past 25 years have taken their toll, raising two teenage girls who needed both parents, and constantly supervising a husband whose emotional and mental state was younger than my children’s. I was also working in the earlier years so that I could finance my girls’ tertiary education if needed. The constant grind and stress saw my health gradually decline to the point that I had to change my life considerably; nevertheless, the lonely challenges and conquests are ongoing. I had been so preoccupied with giving my children and husband the best of care that I finally realised that in those years, no one had “cared for the carer”. Once the girls made their own lives I began to focus on my own needs. Barry and I now have 5 lovely grand children and although we don’t see a lot of them, we enjoy their company when we do. I have learned to better cope by fulfilling myself outside the house with yet more challenges, in my volunteer work and being on a number of boards in the local community. Recently I have found my “niche” in life in cultural heritage, marketing and tourism. strength in numbers One of my interests involved running a carers group in Oakey, with a variety of speakers, picnics and outings. The main theme for our meetings is fun and laughter. We leave our stresses at home for a few hours. We gather once a month, and over lunch we have our “bitch session” to get our frustrations off our chest. We have been meeting now for a number of years, and we have got to know each other well and feel totally at ease when talking over our problems. Carers need the opportunity to vent, especially with people who understand and can relate to your situation. To spend time like this
revitalises you, and gives you the strength to carry on. My husband acquired his brain injury from a freak accident. No one could have predicted that it would happen, and in my wildest dreams I’d never have thought it would happen to us. Believe me, life after a brain injury is no fun. The carer is probably just as much the victim, and while he or she keeps on smiling and coping, they are taken for granted by everyone. It is essentially part of our society that if one of us is disadvantaged to the extent of needing total care, care will be given. In the majority of cases the primary care giver is an immediate family member. This is as it should be — after all, mutual support within a family is also part of our society. But surely the question can be asked — “How much of a carer’s life has to be lost in caring for somebody who has lost part of their life?” Facing the challenge I suppose it is fortunate that no one can predict the future. I had confronted challenges and conquered them in the past. I believe I have coped reasonably well with the challenges of the past 25 years, and I pray that the good Lord still continues to give me the strength, courage and wisdom to face the challenges in the future. The most recent challenge I have had is coping with the aftermath of the Oakey floods — yet another unpredicted challenge that has appeared in my life as every time it rains now Barry fears the flood waters will come again. In closing I would like to quote a poem that was once published in the Headway Magazine:
He’s not quite the same But it ain’t him to blame He wasn’t to know in the prime of his life That the sickness would eat at his brain So now I’m his mother Where I once was his wife For the sake of his future I must forfeit my life. Helen’s story first appeared in Synapse in 2003. Helen has kindly updated her story for publication in Bridge. 16 / B R I D G E M A G A Z I N E
Coping with caring Managing stress when it feels like the whole world on your shoulders Carers have an important and demanding role, and at times stress can feel like a continual part of this. A certain level of stress is normal and even functional in life, however too much can impact on well-being.
Common signs of stress • Tightness in the chest • Gastro-intestinal problems • Irritability • Butterflies in the stomach. strategies to manage stress Strategies can make all the difference in moving through these periods of strain. Coping is a process of managing taxing circumstances that contributes to stress. To cope, people use different approaches, including: • internal methods to help reduce the tension and negative mindset associated with stress • physical strategies to help the body relax • problem-oriented strategies, to directly solve or manage the problem. You may or may not be aware of the strategies you use, so it is worth taking the time to have a look in your own toolkit. Taking the time to think about the strategies you use may reveal some patterns in your responses to stress and whether these coping methods are helpful. Questions to ask yourself How do you respond when faced with stressful circumstances? Do the strategies you use reduce the physical signs of stress? Research indicates that the strategies we use to deal with stress are associated with the way we adjust emotionally. What works for one person may be of no use to another, so experiment with 17 / B R I D G E M A G A Z I N E
all the strategies you can and stick to the ones that work for you. the good, the bad & the ugly Examples of specific coping strategies (whether helpful or unhelpful) include: • Avoidance • creating a plan • knowledge seeking • using alcohol or other drugs for relief • up-skilling • sharing your experiences in a support group • soothing self-talk. Some coping strategies are more effective than others. Some may even cause continued or elevated stress, which can lead to depression and anxiety. Examples of unhelpful strategies are procrastinating, ruminating and worrying. Some people feel worrying helps them to manage a problematic situation, but worrying is often an unhelpful strategy causing a person to get stuck in a relentless cycle of stressful thoughts with no solutions. Procrastination, distancing or avoidance also do little to provide positive adjustment to stress, and can prolong stressful problems, add to a negative mindset, and even lead to problems with anxiety and depression. Knowledge-seeking, up-skilling, planning and directly tackling solvable problems are all positive strategies. However, they are most suited to stressful situations that are directly controllable through our actions. When the situation is beyond our control, we need strategies that focus on creating more helpful thinking patterns, such as realistic and rational thinking, and the use of humour. Sometimes it
is about using the most appropriate strategies in the right circumstances. In situations you have little control over; use of emotion-focused coping (use self-talk to calm yourself, positive thinking, and humour) can be more effective. How you perceive the situation is very important, as in the old example of seeing a glass as half full or half empty. Some positive coping tools • Schedule and prioritise tasks to help with control and looking toward final outcome • Learn all about brain injury to develop realistic expectations in your situation • Source information on community services that can provide support and resources • Join support groups and go on outings with other carers • Have regular talks with a good listener • Reward yourself or have events to look forward to once tasks are completed • Get family members and friends to help out with duties/tasks to reduce the burden • Establish a list of your priorities • Learn to recognise and challenge irrational thoughts (e.g. “What’s the use? I give up!”) • Encourage and assist the person with the brain injury to be as independent and self-reliant as realistically possible • Exercise • Keep a diary. after more resources or info? Visit www.carersaustralia.com.au or call them 1800 242 636 to find the details for the carers organisation in your State, for information, support and details on support groups. ◗◗
A sufferer’s advice: “get help”
Ethan was diagnosed with FASD when he started school. “I regret taking that first drink,” says his mother, Adelaide Muswagon.
Mum knew the risks of Foetal Alcohol Spectrum Disorder, but couldn’t stay the course. Ethan was diagnosed with Foetal Alcohol Spectrum Disorder (FASD) when he started school. “I regret taking that first drink,” says his mother, Adelaide Muswagon. As a single mum with a social work degree, a good job, beautiful kids and a supportive ex, Adelaide Muswagon seemed to be doing OK. On the surface, she seemed to have it all together. But deep down, it kept running off the rails. Muswagon drank while she was pregnant with her youngest son, and Ethan was born with a number of challenges. While he looks perfectly healthy, Ethan was slow to learn, and had frequent temper tantrums and bouts of crying. She drank to deal with the stress. Eventually, she became a weekend binge drinker. Then the weekends turned into fouror five-day benders. “Today, I regret taking that first drink,” Muswagon said, clear-eyed and sober in an interview. “I can’t change things or take them back. I already harmed my child. I just want to tell others “If you do get pregnant, don’t drink.” Muswagon feels ashamed, but knows she isn’t alone. “Get help for yourself,” she said. “A mother can’t help her child if she can’t help herself ”. She hopes that by sharing her story, others might not be so quick to judge, but will offer support and encouragement instead of shame. “It took a lot of courage for me to get some help,” said Muswagon. “I know behind my back I was called an alcoholic and druggie,” said the mother of four. “But they didn’t know what I was going through.” The Norway House woman was raised by
her mother’s sister, who she believed was her mum. When Adelaide turned 11, she learned the shocking truth. The drunken “auntie and uncle” who never attended family functions because they were too busy drinking were actually her parents. “At first I was angry. I hated my parents for giving me up. Why are they giving me up? Who are my siblings?” Muswagon learned she had eight siblings. “My parents were — and still are — alcoholics,” she said. She knows her mother drank during her pregnancies, and Muswagon suspects she herself may also have some foetal alcohol effects. “I wouldn’t doubt it,” she said, adding she has a hint of some of the physical and mental characteristics. “I tend to have outbursts for little things. When things are a challenge, I push it away.” Often, she can identify with her son Ethan. “I see myself in him when I was younger.” But as an educated adult who learned in university about the impact of alcohol on the foetus, she was supposed to know better and do better. She had three kids at home, including Ethan. He was about five years old and starting school when a psychologist, a speech pathologist and other specialists came up with a diagnosis. He had foetal alcohol spectrum disorder. “I was in denial at first,” she said of her son’s disorder and her drinking that caused it. “Every weekend I’d think ‘I’m going out and having a good time.’” But she didn’t have a good time. Muswagon hit rock bottom. She lost her job as a Child and Family Services (CFS worker). She got caught driving impaired.
“I didn’t know where to turn. My life was so negative. I was still using alcohol and drugs. I thought it was helping me. It was only producing more negative emotions.” She thought about suicide. “The turning point for me was I almost lost my kids,” said Muswagon. CFS was preparing to take them. “My family means the world to me. I didn’t want to end up alone,” she said. She swallowed her pride for the sake of her kids and herself. “For the longest time I felt bitter towards the agency,” she said. “It took me a long time to forgive and approach them for help.” Now she sees their role in a new light. “I’m thankful they snapped me out of my state of mind,” she said. “As a whole family, we got counselling.” Ethan, who sports a Justin Bieber hairstyle, gets extra help and therapy in school. “I plan to return to the workforce,” said Muswagon. “I’d like to work with families or addictions, something where I can interact with people. I want to help other women going through what I went through. I want to give them encouragement. “I know there are negative attitudes towards women like me. There needs to be understanding where we’re coming from, and why we’re doing things, how a person feels.” Muswagon said it’s been months since she went on a bender and she is still receiving counselling. “I’m still working on me.” ◗◗ This article by Carol Sanders in the Winnipeg Free Press (www.winnipegfreepress.com) on 26 January 2011 and is reproduced with permission. 18 / B R I D G E M A G A Z I N E
Recent research provides some new tips on whipping your memory back into shape
Impaired memory is an extremely common problem after a brain injury. Treatment and rehabilitation traditionally focussed on preventing further damage, and teaching personally effective coping strategies such as writing down appointments and tasks or taping a list of medications to the front of the fridge. New research suggests, the brain is sufficiently plastic that memory can also be trained. Train your brain Brain training does boost brain power. Doing those crosswords, sudoku, logic puzzles or games really will help. A long-term 2006 study1 used 10 training sessions, each lasting 60 to 75 minutes, conducted over a five-week period. After five years, there was sufficient improvement to counteract the expected degree of decline in cognitive performance. There is one catch to this study: The results were specific to the training. Learning psychologists often use the phrase “expertise is task-specific” to describe this. If you want to improve your cognitive abilities, train the abilities you want to improve. So if you want to improve your memory, train your memory.
19 / B R I D G E M A G A Z I N E
Be healthy and well-fed If you are tired, hungry, dehydrated or don’t have enough vitamins and essential minerals in your diet, you can’t be expected to put in your best performance. The latest research indicates that moderate iron deficiency, not severe enough to result in
obvious anaemia, can change cognitive and behavioural functioning. A study2 looked at young women of reproductive age, comparing the cognitive performance of women who were iron-deficient to the cognitive performance of women who were iron-sufficient. Iron-sufficient women performed better on
cognitive tasks, completing them faster than the women with iron deficiency anaemia. After treatment with iron supplements, both cognitive performance and speed in completing cognitive tasks improved significantly. This study demonstrates two very important facts: being healthy and having a good diet can significantly affect your cognitive abilities and, therefore, quality of life. You don’t have to be displaying heath problems from lack of iron or other minerals to feel its effects. If you haven’t had a good check-up for a while, maybe now is the time. Make sure you get plenty of fresh fruit and vegetables. Supplements can be expensive, and it’s actually possible to overdose on some vitamins. A good diet should mean there’s no need for supplements. Learn by rote Yes, rote-learning — the memorisation of entire passages, poems or plays — not only is occasionally necessary for everyday life but helps to improve your overall memory performance. Researchers at the University College Dublin3 discovered that rote-learning memory exercises cause identifiable changes in brain chemistry and result in improved memory performance. Volunteers undertook six weeks of intensive rote-learning training followed by six weeks of rest. At the end of the six weeks training there was no identifiable improvement in memory, but at the end of the six weeks rest there was a clear improvement in verbal and episodic memory, as well as physical changes to the hippocampus (small regions in each hemisphere of the brain which are key to both memory and spatial awareness). This study is exciting, not only because rote learning plays such an important role in everyday tasks, but because it is something that anybody can do — anywhere and anytime. Memorise a passage of your favourite film or play, memorise your favourite songs, memorise passages in the newspaper — it’s all good training for your brain. Learn in small steps It’s called distributed practice, and it’s very good news for people who have difficulty with cognitive fatigue or with concentration because it’s more effective than trying to do everything at once. Neurologist Dr R. L. Kaplan, writing on the Smart-Kit website (www.smart-kit.com), reports that there is an overwhelming amount of research indicating that breaking learning up into small steps will not only be much more effective in the long run, but can even halve the total amount of time you need to spend studying. Ideally, the breaks in between can be spread over several days, giving the brain plenty of time to recharge.
When combined with the rote-learning mentioned above, this insight can make it significantly easier to memorise instructions, phone numbers or the exercises your occupational therapist gave you. However, don’t spread your learning sessions out too much: leave it too long between sessions, and you may forget what you just learnt. Revise early When you learn something new, you don’t gradually forget that information. New information actually gets lost very quickly, with the amount forgotten tapering off over time. Dr Kaplan reports that this fact has been known for at least 150 years, and that research since then has only supported the first studies and improved our understanding of the speed of memory loss. Unfortunately, that speed is “very quickly”. If you learn something new, you will have forgotten most of it within a couple of hours, making it important that your next practice, study or learning session happens quickly, and not tomorrow. This fact may help explain why distributed practice is so effective — spreading out your learning means that frequent study sessions on the one day catches your brain before you’ve forgotten most of what you’re trying to learn. Conclusion Putting all this research together leaves us with the positive conclusion that yes, you can make a difference. You can train your brain if you have a brain injury, a degenerative disease or no neurological injuries, or conditions at all. Train your memory with recall practice, have short practice sessions spread one or two hours apart, and back it all up with a healthy diet. Just using the principles of distributed practice and early revision will improve your ability to learn new information or skills. Add in constant rote-learning practice and you can improve your ability to retain information presented in any form. ◗◗ REFERENCES AND FURTHER INFORMATION 1 Long-term Effects of Cognitive Training on Everyday Functional Outcomes in Older Adults, http://jama.amaassn.org/cgi/content/short/296/23/2805 2 Iron treatment normalizes cognitive functioning in young women, http://tinyurl.com/2chr26 3 Rote-learning improves memory in older adults, www. ucd.ie/research/news/2006/dec/131206_Memory_Loss. htm Distributed practice, www.smart-kit.com/s580/acceleratedlearning-improved-memory-via-distributed-practice/ Learning Strategies: How one study tip can dramatically improve your memory, http://www.smart-kit.com/s572/ learning-strategies-a-study-tip-to-improve-memory/
Driving after a brain injury
Returning to driving is usually a major goal after a brain injury, due to a loss of mobility and a reliance on others. Some of the cognitive, perceptual and physical problems that affect driving include reduced reaction time, fatigue, epilepsy, loss of hearing or vision, poor concentration, memory problems, poor judgment/ decision-making, impulsivity and poor coordination.
It is important to remember that the laws insist it is your responsibility to obtain assessments showing you are fit to drive again. If you have accident, and the effects of a brain injury contributed to the accident, then you are heading for major legal and financial issues if you did not obtain an assessment! Assessment of driving skills and safety is extremely important due to the risk of accidents. Some people may be advised not to drive after the accident, and this decision may be reviewed following a period of recovery and re-assessment. These decisions may be made by a number of people including a medical practitioner, occupational therapist, neuropsychologist, physiotherapist or an assessor from your transport or roads department. When a driving assessment is not compulsory it is recommended that individuals and family members get advice regarding the need for a driving assessment from a doctor, preferably a specialist such as a neurologist or neurosurgeon. Some individuals make their own judgment that they are not safe enough to drive. This can sometimes be because they have developed high levels of anxiety about driving or being in a car as a result of a previous accident. Ask yourself these questions before driving: • Do I feel well enough or alert enough to drive today? • What’s the best time to set out and come home? • Can I handle the distance without undue fatigue? • Do I know the best route to take? • Has the car enough petrol, water, air in the tyres etc? Driver rehabilitation or retraining programs are available from some rehabilitation hospitals, community-based rehabilitation services, driver training schools or road associations. Remember some particular types of impairment can be compensated for by specialised vehicle modifications. ◗◗
20 / B R I D G E M A G A Z I N E
Supporting communication in dementia by Dr Erin Smith, Dr Rosemary Baker and Dr Megan Broughton School of Health and Rehabilitation Sciences, The University of Queensland
Communication difficulties are a common feature of dementia, but some aspects are affected more than others.
The difficulties that people with dementia have with memory, attention and cognitive slowing can lead to problems with finding the right word, understanding spoken language, and participating in conversation. However, some aspects of communication remain relatively well preserved, even into the later stages of the disease. These include the understanding and use of non-verbal communication (including sensitivity to emotional tone), and the desire to communicate. Based on this knowledge, researchers from the University of Queensland have devised MESSAGE, a set of practical strategies for supporting communication skills in people with dementia.
21 / B R I D G E M A G A Z I N E
MESSAGE COMMUNICATION SUPPORT STRATEGIES M- Maximise attention To give a person with dementia the best chance of taking in what is said, make sure you first get their attention by using their name, moving to their eye level, and gaining eye contact. You may also need to remove distractions, by turning off the TV, for example. Then keep the person’s attention by maintaining eye contact as you speak and listen. It is often difficult for people with dementia to split their attention between different speakers, so it helps if they speak with only one person at a time.
E- Expression and body language The person’s ability to understand emotional tone and body language can help you to maintain interaction as the disease progresses, by using simple non-verbals like a smile, a nod, or eye contact. But this retained emotional understanding also means that you need to be aware of what your tone of voice or facial expression is communicating, as this can influence the person’s levels of stress and agitation. S- keep it Simple Keeping your spoken sentences short and simple can help a person with dementia to understand. Memory problems make it difficult
the art of patience and sensitive listening Pam: “Now, I’m just trying to think what it was I used to teach… Isn’t it terrible? My memory’s fading… I was a teacher for something. They used a... a... a machine.” Carer: “Mmhmm . . .” Pam: “Stubbie shorts and that. All that sort of thing.” Carer: “Oh, a sewing teacher?” Pam: “Yes, a sewing teacher.”
PRISON VERSUS REHAB COSTS
With sensitive and patient listening, carers can help people with dementia get their message across and make the most of their communication.
to follow lengthy sentences or instructions with multiple steps (e.g. “Could you please put the milk back in the fridge, take out the butter and put it on the table.”). So keep the number of information elements in a sentence to one or two familiar things (“Could you please get the milk out of the fridge.”). Answering questions can also be supported by keeping things simple. It is easier for the person to answer when you give one or two clear choices (“Would you like some juice?” OR “Would you like juice or milk?”) compared with asking an open question (“What would you like to drink?”), because the person only needs to think about the response options rather than searching through memory for an appropriate answer. S- Support their conversation The next four techniques can help a person with dementia contribute more successfully to a conversation. First, to compensate for cognitive slowing, allow longer pauses during conversations (around 5 seconds). This gives the person the extra time needed to process the information and produce a response. Second, to help with difficulties in being able to come up with the right word, you can offer suggestions in a natural, conversational way (“Oh you mean ...”). This can also help reduce frustration and embarrassment. Third, it can be hard for the person to take in and understand things on first hearing. When this happens, try repeating what you have said in the same words, giving them a second chance to catch anything they have missed. If that doesn’t work, try saying it again in a different way, in case it was the particular words you chose that made it difficult. Finally, because of difficulties with working memory, people with dementia can lose track of the topic of conversation and can have trouble recalling information already mentioned. You can compensate for this by slipping in regular reminders of the topic throughout the conversation, and by referring to things by name instead of using non-specific terms such as “it” and “they”. A- Assist with visual Aids Using a combination of spoken words and
visual aids (gestures, actions, objects or pictures) can help with comprehension. For example, when asking a choice question, you could show a picture of the options, or the actual objects (e.g. the juice and milk cartons). As the person starts to have greater difficulty in understanding words, you may find that showing familiar objects (such as plates and cutlery) or actions (setting the table or serving food) can trigger understanding (that it is dinner time) when words fail. G- Get their message The role of any conversation partner is to try to understand what the other person is saying. This may be more difficult than usual with people with dementia, but their communication should still be considered meaningful. Therefore the conversation partner has to take on a greater role in trying to work out the meaning. Some things that can help you to get the person’s message are: paying close attention to the words used and realising that although the words might not be quite right, the intended meaning may be similar; and noticing non-verbal behaviour such as where the person is looking or their facial expression. It also helps to be familiar with the person’s history, interests and routines, as this can help you decipher their meaning. E- Encourage & Engage in communication Social interaction is a basic human need, and this is not reduced with the onset of dementia. It is important to continue to engage the person in conversation and encourage friends and family to do so too. Familiar photos, memorabilia or books serve as helpful visual triggers for reminiscing. To encourage enjoyable conversation, it is best to avoid asking test questions (such as “Can you remember what my name is?”) or disputing facts if the person is confused about reality. You can manage confusion sensitively by acknowledging the person’s feelings and gently guiding the conversation back to a reassuring topic. ◗◗
Let’s start with a few figures. It costs Australia around 2.5 billion dollars a year to run our prison system. Back in 2008, a study by the Productivity Commission showed that it the cost of each prisoner was $98,000 per year. Ongoing research around the world increasingly shows that the majority of prisoners have acquired a brain injury that has at the very least contributed to the reasons for their imprisonment. We can imagine the backlash from society if people with physical disabilities were imprisoned so readily, but the invisible nature of Acquired Brain Injury means that prisons continue to be a very popular form of “rehabilitation” when behavioural problems arise after a brain injury. These inmates with the invisible disability have become even more invisible by being processed by a legal system that has little awareness of brain injury, and being placed in correctional systems where they are even less likely to be assessed or given appropriate support. Certainly the cost of providing behavioural interventions would be less than $98 000 per year, and Synapse has seen the incredible results that Positive Behaviour Support can achieve in its own programs. There is increasing evidence that neurobehavioural rehabilitation for inmates with a brain injury reduces the rates of re-offending, and there are glimmers of change in correctional and justice systems occurring. Synapse has started a strategic project called the Neuro Behavioural Centre which will provide an alternative option to the current practice of imprisonment with a specifically designed neurobehavioural program, comprehensive assessment and interdisciplinary intervention. ◗◗
The authors are part of a research team led by Professor Helen Chenery at The University of Queensland. This team is currently developing educational videos on memory and communication support in dementia. For further information, email Dr Erin Smith at firstname.lastname@example.org
22 / B R I D G E M A G A Z I N E
What if? What if Rachelle’s brother hadn’t survived the accident? What would have happened if he had died that night? What if, while pacing in that small private waiting room, the doctor had walked in and told us they did everything they could and he was gone? My mother probably would have cried, just as she really did that night. My father probably would have tried to attack the doctor in disbelief. Me, I would have run out of that stinking hospital and never looked back. How would we tell his sons that their dad was dead? That he had run into a concrete wall while driving in a race earlier that Friday night and was so severely brain-injured that he died en route to the hospital? He would be gone forever. He wouldn’t be able to teach them how to build a car, how to drive a car, how to do anything that dads teach their young sons. They would have to grow up without a father, only knowing him from their young mind’s eye and our memories. They would soon forget the sound of his voice and the comfort of his hugs.
Feeling overwhelmed... We would have to arrange for his funeral. How do you do that for a 28-year-old man? How do you look at your brother’s dead body, his soul no longer there? We would have seen him in the emergency room that night and there would have been silence, instead of the beeps as air was forced in and out of his lungs. He would have been lying there, still in his driving suit cut to shreds without his glasses. That would look odd — he needed his glasses to see. Love of racing We would have known what killed him — his love of racing and the rush of driving that damn race car. They would come for his body and we would go home without him. We would cry and mourn and make funeral plans. Picking out a casket and planning a service so his friends could come and pay their respects. We would have to pick out dark clothing, as that is what mourning families wear, dark clothing. I don’t think anyone keeps an outfit of dark clothing just in case their brother dies, so I would have to go shopping.
23 / B R I D G E M A G A Z I N E
Surviving the Funeral What would he have liked for a funeral, how would we know? I never asked my brother what he was looking for in a funeral. I just knew he wouldn’t want that elderly lady that played the organ at our great-grandmother’s funeral. I remember how we laughed at how horrible she was. He wouldn’t want that — well maybe he would, it was funny. We would probably cry and hug everyone, even some people that I know we wouldn’t hug under any other circumstances. Someone would probably speak about him, and a reverend would probably pray for him. Maybe we would laugh some; maybe we would just sit in silence. We would only be “the three of us” now where it had always been “the four of us” - mum, dad, Chad and me. I guess these things would have been going through my mind. Crying comes later We would have to go to a cemetery and bury him — one last good-bye. More praying I’m sure, and lots more crying. The three of us would be left with me being the baby of the family and not at all ready for what was ahead. It would probably take months to get his life closed up and put away, taken care of: money, house, belongings, cars. We would try to stay close to his boys, because we’d love them no less now that their dad was gone. Time goes by Time would go by and we would probably learn to deal with his death, even though it was too soon, even though things like this aren’t supposed to happen. My mum would go on with her life, pick up eventually and move on without her son. I don’t know how she would do it, because I am always the one that is stuck. My father would also somehow make it through, although I know he would go about it differently. We all have our own ways of dealing with tragedy. That’s what it would have been, a tragedy — people would whisper it when my dad went to his local haunt for coffee in the mornings, “What a tragedy, lost his only son.” But I am sure he would tell a tale about some race and my brother would live through those stories. Pictures, videos, stories, his boys, his friends — those would be the things we had left of him.
What did happen This, of course, didn’t happen to our family. My brother didn’t die that night. Sometimes I look at death as short and sweet — it comes, you deal with it, and life goes on. Nothing lingers other than the good things that eventually show themselves. I still have my brother here in body, but only sometimes in spirit. His brain injury left him sort of here. He still remembers some of our childhood. He still is there if I need him at the other end of the phone. But as much as it hurts to tell him this, and I never have, it is not the same brother. It’s a new brother, one my therapist has told me dozens of times that I have to learn to love now and adjust to. I wonder sometimes what it would have been like if he had died in his accident. I have a different opinion every time I think about it. His boys are adjusting to their “new” dad. I think as they near teenage years, some parts of their dad may be embarrassing as most things are at that age. I don’t want them to be ashamed of their dad, but I can’t help what has happened to him and I can’t change it. I am still the one telling them those “remember when” stories about their dad, just like I would have had to do if he died that night instead of being in a very long coma with a severe brain injury. I guess what I have found is that my brother did die that night in that race car. I last saw him driving away in his pickup truck with his race car trailer in tow. I didn’t say anything out of the ordinary, maybe good luck, maybe not — I don’t remember. My daughter was with him all that day, the last day of his “life”. We just didn’t get to have the funeral and mourn like all the other families that experience this magnitude of loss. People think we are blessed, and we are in a way. But in some ways we are cursed, my brother, too. We are still “the four of us” and we are going to stay that way, no matter what. Things just change, sometimes it’s bearable and sometimes it’s unbearable. I guess it’s how you choose to look at it. ◗◗ Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from www.lapublishing.com
National Disability Insurance Scheme
As any regular reader of Bridge knows, the support available for Australians with a disability is very limited, given the wealth of our nation. Services are hard to find and there aren’t enough to go around. People with a disability, their families, and carers, know only too well the daily struggle for services and support. There is also huge inequality — people receive different levels of support depending on how, when and where their disability was acquired. The beginning of the draft report by the Productivity Commission says it all — “the disability support system overall is inequitable, underfunded, fragmented and inefficient and gives people with a disability little choice.” The National Disability Insurance Scheme (NDIS) has been proposed as a way to make it easier for people to access essential care, support, therapy, equipment, early intention and training. Over the next few months the Productivity Commission will report to the Government on the findings of its inquiry into a long-term disability care and support scheme. If accepted, the scheme could be funded by all taxpayers through general revenue or through a Medicaretype levy. Funding for essential care, support, services, therapy, aids, equipment and training could then be drawn from this consistent pool of funds. The principal beneficiaries would be those people whose disability has a significant impact on their daily life. Most importantly, the scheme would provide support no matter how that disability was acquired. People born with a disability or who acquire a disability through accident, injury or a result of a medical condition or with a mental illness would all be eligible for assistance. Eligibility for the scheme would be transparent and based on careful assessment. The system would be person-centred and individualised, based on the choices of the person with a disability and their family. The system would focus on early intervention and providing those supports which produce the best long term outcomes.
two schemes proposed The larger National Disability Insurance Scheme will provide support to approximately 360,000 people whose disability has a significant impact on their daily life. A second smaller scheme, the National Injury Insurance Scheme, would provide support for people who suffer a catastrophic injury and would be based on widening and strengthening existing State-based schemes. A person getting support from the NDIS would need to have a permanent disability and meet one of the following conditions: • Have significant limitations in communication, mobility and self-care • Have an intellectual disability • Have a condition for which early intervention would improve functioning • Be a person for whom intervention would have significant benefits. The Commission also suggests that the NDIS should have an information and referral function for a much larger group of people with a disability, providing information, referrals and linkages to services and supports outside the NDIS. Once a person has been deemed eligible and their support needs assessed, they would be entitled to a package of supports and services, which would be portable across Australia. They would be able to either: • Choose their own service providers • Ask a disability support organisation to assemble a package on their behalf • Cash out parts of their funding allocation and direct the funding to services they believe best meet their needs. The list of supports the NDIS would provide include: • Aids, equipment, home and vehicle modifications • Personal care • Community access – to support community inclusion • Respite • Specialist accommodation support • Domestic assistance • Transport assistance
• Therapies • Guide and assistance dogs • Case management and coordination • Specialist employment services • Crisis/emergency support. The Commission calculates that an additional $6.3 billion is needed to fund the new system and suggests that only the Commonwealth has a sufficient taxation base to meet the cost of the scheme. The Commission therefore proposes the federal government take over funding the entire disability system. They prefer to see the funds drawn from general revenue rather than a specific tax or levy but recommended the funds not be subject to the annual budgetary process and quarantined for NDIS use only. The Commission has suggested a pilot project in 2014 in one region in Australia. This would extend to the whole of the country the following year, beginning with all new cases of significant disability and some of the groups most disadvantaged by current arrangements such as adults living with ageing parents and young children requiring early intervention. The scheme should be fully functional by 2018. Synapse encourages our readers to all to examine the Productivity’s Draft Report and Recommendations. We all have a responsibility and opportunity to provide input into the Government’s proposed program to ensure that we do reduce the long term cost of providing for people with a brain injury and/or those who behaviours who challenge our understanding. Visit http://everyaustraliancounts.com.au if you would like to read more about the NDIS and support the campaign. ◗◗
24 / B R I D G E M A G A Z I N E
Assistive technology for a smarter home Making life is easier when living with a disability Assistive technology can be defined as any device or system that provides people with practical solutions to everyday life activities.
Prosthetics & orthotics Replacement or augmentation of body parts with artificial limbs or other orthotic aids such as splits or braces.
types of assistive technology A brain injury can have such a wide range of physical and cognitive effects that it is well worth exploring assistive technology for anything that can help make life easier.
Sensory aids for vision/hearing impaired Aids such as magnifiers, Braille and speech output devices, large print screens, hearing aids, visual alerting systems, telecommunication devices.
Aids for daily living Devices that help in daily living and independence. Examples include modified eating utensils, adapted books, pencil holders, page turners, dressing aids, adapted personal hygiene aids.
Recreation Devices to enable participation in sports, social, cultural events. Examples include audio description for movies, adaptive controls for video games, adaptive fishing rods, cuffs for grasping paddles or racquets, seating systems for boats.
Alternative/augmentative communication Devices and systems that help people with speech impairments or low vocal volume communicate: speech generating devices, communication software, voice amplification aids. Mobility aids Devices that help people move within their environments: electric or manual wheelchairs, modifications of vehicles for travel, scooters, crutches, canes and walkers. Seating and positioning Adapted seating, cushions, standing tables, positioning belts, braces, cushions and wedges that provide body support to help people perform a range of daily tasks. Computer access aids Headsticks, light pointers, modified or alternate keyboards, switches activated by pressure, sound or voice, touch screens, special software, and voice to text software. Environmental controls Electronic systems that help people control various appliances, switches for telephone, TV, or other appliances which are activated by pressure, eyebrows or breath. Home & workplace modifications Structural adaptations that remove or reduce physical barriers: ramps, lifts, bathroom changes, automatic door openers, expanded doorways. 25 / B R I D G E M A G A Z I N E
funding options People who are not familiar with the financial costs of living with a disability are often amazed by the multi-million dollar payouts awarded by courts in some cases. However, the cost of providing lifelong support often mean that every cent of that money is used. The cost of assistive technology often makes a substantial bite into any payout. So what do we do if there isnâ€™t any large legal settlement in the offing? Funding for assistive technology is usually available through some government organisations, whether it be funding for a wheelchair or providing free information on home maintenance and repair. Non-government funding may be available through disability-specific organisations through support services, equipment loans, accommodation, and advocacy or assistance when applying for grants. Examples in your State might include a spinal injuries association, motor neuron disease association, or muscular dystrophy association, and of course your brain injury association. Contact both the Brain Injury Association and Independent Living Centre in your State to find out all the possible funding sources available. Other service organisations that may supply a one-off grant are groups like RSL clubs and Lions Club International.
queensland smart home This initiative from LifeTech Queensland aims to improve the functional independence and wellbeing of people living with a disability by incorporating telecare and assistive technology into people’s living environments. The Queensland Smart Home Initiative (QSHI) is a project set up by a team of corporate and community organisations, universities and government bodies to educate the community and encourage the adoption of telecare and assistive technology for older people, people with ongoing needs, and people managing chronic conditions. To address this trend, LifeTec Queensland has developed a demonstrator model which was built in partnership with the QSHI. It is a 60m2 replica of a living environment set up like a modern apartment, with the technology positioned where it would be in a real home environment. It allows industry professionals, carers, and the general public to touch and feel the technology, and see firsthand the benefits of these devices in action. When installed in the home these devices assist people to carry out everyday activities and maintain their safety and independence in the home. The aim of the Queensland Smart Home Demonstrator is to advance the adoption of intelligent assistive technologies and smart homes to encourage and support independent
living, access to care, improved outcomes and reduced costs. The technology can provide quick access to emergency assistance, monitor a resident’s condition to ensure they are carrying out healthy activities in the home (e.g. regularly using the kitchen and bathroom) and alerting of any potentially dangerous situations such as falling over, not getting out of bed in the morning, or leaving the gas on or taps running. The technology can also alert residents and carers of activity in the home, such as the phone ringing, doorbell chiming, or other assistive technology devices being activated. As well as the latest technology, the QSHI is fitted with appropriate fittings such a non-slip tiles and flooring, grab rails, taps and toilets, kitchen appliances, tools and gadgets, and furniture. The Smart Home Demonstrator, located at LifeTec Queensland’s Brisbane Display centre at Newmarket has generated a lot of interest in the community. It is free to experience, and is located inside LifeTec’s Newmarket display centre, Level One, Reading Newmarket, Cnr Newmarket and Enoggera Roads, Newmarket. It is open Mon-Fri 8:30am-4:30pm and Sat 9am -2pm. No appointment is necessary, however if you have a large group or require a demonstration please contact LifeTec to arrange a suitable time. ◗◗
LifeTec is a not-for-profit, non-government Queensland organisation providing professional information and advice on assistive technology. LifeTec assists a wide range of people who wish to remain independent in their homes for as long as possible, as well as family members, children and adults who are living with a disability or supporting a person with a disability. Services include individual consultations, free community talks, displays and interactive workshops for health professionals. These services are delivered by health professionals from our Brisbane or Townsville Centres, or throughout rural and remote Queensland as we visit each region during the year. Our health professionals are available six days a week (Monday to Saturday) to assist any caller or visitor. For more information contact 1300 885 886 (Queensland only), email email@example.com or visit www.lifetec.org.au
independent living centres in other states ACT SA VIC
Ph: 02 6205 1900 Website: www.health.act.gov.au/ilc Ph: 08 8266 5260 Website: www.disability.sa.gov.au Tel: 03 9362 6lll Website: wwwyooralla.com.au
NSW TAS WA
Ph: 02 9890 0940 Website: www.ilcnsw.asn.au Tel: 03 6334 5899 Website: www. ilctas. asn. au Tel:08 93Bl 0600 Website: www.ilc.com.au 26 / B R I D G E M A G A Z I N E
Fatigue The symptoms and triggers of fatigue, and how to manage it
At some stage we have all found a supermarket too much to handle — all the people, colours, ads screaming for our attention, announcements, 50 types of cereals and so on. If we are tired, anxious or in a bad mood it is simply too much information to process. This sensory overload is extremely common after a brain injury, and supermarkets may be avoided completely. It can also happen in noisy or crowded situations like concerts, group conversations, restaurants or being around young kids. What is happening in the brain? Imagine moderately heavy traffic flowing on a four lane road. It only takes one lane to close down and suddenly it’s chaos, with traffic banked for miles. Our ability to process sensory information often slows after a brain injury, and the threshold for tolerating noise, light, movement and information can be much lower. The result? Irritability, fatigue, and avoidance of conversations, large groups and noisy environments. What can be done? In the early stages of recovery, many people have to change their lifestyle. Some find themselves not going to bars or noisy restaurants anymore, or at least to quieter ones. The problem is, you can’t always choose quiet situations. What about situations you can’t avoid, like a football game on the TV or the kids may be running around? If you can’t avoid the situations, take regular breaks. Find a quiet place and take a nap for an hour. You may have to go out to your car or go for a long walk by yourself. Inform your family members/ friends/employer about this problem. Consider wearing ear plugs or playing quiet music through an MP3 player when noise is an issue. Some people have visual overload and sensitivity to light. Typically, very bright lights will cause overload. Buy the darkest sunglasses you can find. Most often, the cheapest sunglasses work the best. This will also help those who get headaches from bright lights. Visual overload can also occur from having to process too much information. If 50 types of cereal in the supermarket is too many try a smaller store! ◗◗
Fatigue is one of the most invisible effects of a brain injury, with family members, employers or friends often mistaking this lack of energy as simple laziness. This excerpt from Brainlink’s publication, For Those Who Care, provides some handy coping strategies.
Contingency plans Fatigue may occur at the least convenient times – on public transport or during a meeting. You need to negotiate ways of coping when this happens. You can use specific strategies or call in extra support. Work out contingency plans with your family member. Your neuropsychologist, occupational therapist or physiotherapist can help with suggestions. Assess your environment Provide an environment that is easy to move around and work in. Think about how and where things are stored, bench heights, entrances, types of furnishing, lighting. For example, some people may find fluorescent lighting or dim lighting more tiring. Assess the best hours Some people function best in the mornings, so complete demanding tasks then. Others function better in the afternoon or the evening. Organise your routine accordingly. Schedule rest periods Make a daily or weekly schedule and include regular rest periods. “Rest” means do nothing at all. Use aids Use mechanical aids to conserve energy for when it really counts. One man spared his legs extra effort by using his wheelchair to get from his house to the car, then from the car to the church, before walking his daughter, the bride, down the aisle. Break it down Break down activities into a series of smaller tasks. This provides opportunities to rest while
27 / B R I D G E M A G A Z I N E
allowing the person to complete the task. Encourage sensible shortcuts. Set priorities Focus on things that must be done and let the others go. Medication highs & lows Be aware of changes throughout the day that relate to medication. Is the person better or worse immediately after their tablets? Plan their activities around these times. Sleep Encourage a regular sleeping pattern. Some people may also need a regular nap – or two – during the day. Fitness Your family member should maintain fitness within their individual ability, that is, enough exercise to stay fit, but never to the point of causing tension, overtiredness or cramps. Weight Maintaining a healthy weight helps. If your family member’s condition affects their ability to eat, consult a dietician and speech pathologist to ensure they have a nutritious diet that is easy to manage Weather Hot weather can also increase fatigue. Plan around this. Seek support Ask for advice. In particular, an occupational therapist can visit your home and advise on an energy-conserving plan of action. ◗◗ This article has been reproduced with the permission of BrainLink, from their excellent brain injury resource available for free download at www.brainlink.org.au This publication is split into sections covering medical issues, common changes after a brain injury, practical assistance and emotional issues. The website also has a wide range of fact sheets on many other issues. BrainLink is a Victorian service dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families.
The big picture Brain injuries are a worldwide issue, with increased rates on the way . . . Approximately one in six people worldwide have a neurological disorder1, and the majority of these are a type of Acquired Brain Injury. In the first world, the incidence of stroke will continue to rise as the average age of populations rise, while many forms of traumatic brain injury (TBI) have fallen due to prevention strategies. In contrast, a silent epidemic of road traffic accidents is on the way in developing countries: by 2020, road traffic crashes will have moved from ninth to third place in the world ranking of the burden of disease. TBI is a leading cause of death and disability around the globe, and presents a major worldwide social, economic, and health problem.2 It is the number one cause of coma, and it plays the leading role in disability due to trauma,2 and is the leading cause of brain damage in children and young adults.3 In Europe it is responsible for more years of disability than any other cause, and it also plays a significant role in half of trauma deaths. Findings of incidence and prevalence in epidemiological studies vary based on such factors as which grades of severity are included, whether deaths are included, whether the study is restricted to hospitalized people, and the study’s location. The annual incidence of mild TBI is difficult to determine but may be between 100 to 600 people per 100,000.4 A 2006 report1 by the World Health Organisation (WHO) found that the major issues with neurological disorders are stigma and discrimination, cost-effective interventions are available but often not used, many disorders are easily prevented but little action taken, and available resources are inadequate and poorly distributed. Some of WHO’s key recommendations were: • Gain commitment from decision-makers • Increase public and professional awareness • Reduce stigma and discrimination • Strengthen neurological care in healthcare • Incorporate rehab into the key strategies • Develop international collaboration • Define priorities for research. The good news is that there is a wide variety of prevention strategies for reducing the
incidence of brain injury in each country. In the same report, WHO gave these examples: Primary prevention aims to prevent the onset of disease. Examples are vaccines that have removed polio from all but four countries. Controlling blood pressure, cholesterol levels, diabetes, smoking, poor diet and lack of exercise can drastically reduce strokes. Programs in Japan have seen stroke rates fall by more than 70%. Secondary prevention involves early diagnosis, appropriate treatment, management of risk factors and compliance. An example is medical treatment of epilepsy can render up to 70% of patients seizure-free. Management of patients with stroke by an organized unit significantly reduces mortality and disability in comparison with standard care on a general medical ward. Tertiary prevention involves rehabilitation, palliative care, treatment of complications, patient and caregiver education, selfsupport groups, and reduction of stigma and discrimination. Interventions targeting stress and depression among carers of patients with dementia, including training, counselling and support for caregivers, have shown positive results for the management of dementia. The strategy of community-based rehabilitation has been implemented in many low-income countries around the world with success, while methods to reduce stigma related to epilepsy in an African community successfully changed attitudes to epilepsy. ◗◗ 1 Neurological Disorders: public health challenges, World Health Organisation, 2006. 2 Alves OL, Bullock R (2001). “Excitotoxic damage in traumatic brain injury”, in Brain injury, Boston: Kluwer Academic Publishers. 3 Zink BJ (March 2001). “Traumatic brain injury outcome: Concepts for emergency care”. Annals of Emergency Medicine, 37 (3): 318–32 4 Hannay HJ, Howieson DB, Loring DW, Fischer JS, Lezak MD (2004). “Neuropathology for neuropsychologists”, in Neuropsychological Assessment, Oxford University Press. 4 “Grappling with traumatic brain injury”, in The Lancet, Dec 2007.
What is full recovery?
What is “full recovery” when it comes to brain injury? The average person is under the impression that full recovery is a possibility. That is, they think the person can return to the exact same state they were prior to the injury. Perhaps that is true for slight concussions and a few other instances where the brain can actually heal over time. Sadly, in far more cases, that is not a possibility. For instance let’s take my anoxic brain injury. To look at me and to interact with me twenty one years after my brain injury, some would say I have fully recovered. Let me be the first to say — that is not true. I will never “fully recover” and here is why. You see, the portion of my brain that controls both short-term memory and peripheral vision was deprived of oxygen and thus destroyed. I will never be able to use that part of my brain again. The fact that I have no short-term memory creates a multitude of other challenging circumstances. Thankfully, I am able to live a very fulfilling life with the use of various strategies to compensate for my losses. Also, none of us use anywhere near the brain capacity available to us. I happen to believe it is possible to open up some of those “dormant brain cells” and make use of them. Because I had no physical injuries, I appeared normal. After all, I was released from the hospital without the knowledge that I had suffered a brain injury — somehow the doctors and hospitals missed the fact that I had an anoxic brain injury during that time. So, it was several months and much anguish later that it was “discovered” I had suffered an anoxic brain injury while in the hospital. The journey back from a brain injury is not an easy one. It takes determination and support from at least one person who can be counted on no matter what happens to work toward full recovery to the extent it is possible. Beth has been posting to her blog since 2008 after acquiring an anoxic brain injury. You can visit her inspiring blog at http://blog.brain-injury-online.com
28 / B R I D G E M A G A Z I N E
FEEDBACK FROM OUR SEX ISSUE
The world through my eyes Our previous issue of Synapse looked at the changes in sexuality that can arise after a brain injury. Some of our readers kindly provided the following responses. When did your partner acquire a brain injury? In 2002, through a work accident which triggered a cerebral haemorrhage on a previously unknown AVM (arterial venous malformation). Has your relationship changed since your partner acquired his brain injury? Yes. Often with a brain injury the personality changes. That is why it is often called a hidden sickness because on the outside they appear the same, but to those close to them they are different. I now find myself married to a man that I didn’t marry. Yes, I still loved him very dearly and I was determined to work through this change and whatever came of it, but he was a different man, but I learned to love this one too. Has your ability to enjoy intimacy with your partner resumed? Yes. It did stop for some time, but probably through fear of triggering another brain injury so our intimate times became less and less. The second reason was from adjusting mentally to being intimate with a different man. What do you think about Synapse’s decision to cover the topic of sex? I think it’s such a necessary topic. Although it is not normally discussed, in my situation it helped to hear about how a brain injury affected other couples. It made me realise that I wasn’t alone, and received help in knowing how to deal with these issues, both physically and emotionally. Do you think intimacy is important in a relationship? It is absolutely vital. Without it you are just friends or room mates. Intimacy takes it to the next level of a deeper relationship, and draws you closer together. But it’s a hard one to cope with, and for me I didn’t master it. ◗◗
29 / B R I D G E M A G A Z I N E
I’m a 24-year-old proud to be an Australianborn, half-Chinese young woman. I was born in Cairns, the great far north of Queensland. I lived there for most of my life before finishing high school and deciding to make a move to Brisbane for a better opportunity. I have many interests, but I’m most passionate about helping others. In my family I was taught from a young age to look after my family members and friends. And as a kid I took that to heart; since that time I have always tried to help my family and friends as much as possible. My story starts with my younger brother who is 21 and has an Acquired Brain Injury. When we were young, our family went on a trip to Adelaide, and my little brother became very very sick to the point where the doctors said they couldn’t do any more for him. I remember the night when everything changed. I was playing with my brother and I remember looking at him and saying “ Jaydon your eyes are all yellow!” It started off as glandular fever and then from that he got blood poisoning, and his brain started to swell. They diagnosed it as head meningitis, and from that he got pneumonia. While all that was happening he got a Staphylococci (Staph) infection in his spine as well. As he lay in the bed for weeks to months his back was eating itself away from the staph infection, you could see this little four-year-old’s spine. My brother wasn’t looking good at all, and then for some unknown reason things started to settle down, the medication started to work and he started to
get better. It took him a few months to recover and learn to walk again. Since being sick, my brother has had many troubles with learning and socialising. I hope with the help of Synapse and the support networks they offer that we can help my brother to have a comfortable life living with a Acquired Brain Injury. In the recent years I’ve had a lot to do with helping my aunty and uncle. My aunty has a pituitary tumor, and from that has many other medical problems — gigantism and CharcotMarie-Tooth disease just to name a few, while my darling uncle has Parkinson’s disease. Over the years I’ve watched them get frailer to the point of not being able to do the everyday normal tasks that we take for granted. We don’t think too much about taking the rubbish bin down the driveway, but for them it’s a very big effort. Watching loved family members get sick is a very hard part of life. I’ve seen how the Synapse team has helped many people with a brain injury, and it gives me hope to be able help my own family. So I guess brain injuries are everywhere, and there are people who don’t know that there is help out there, but all you have to do is reach out and ask. The team at Synapse are all very caring, and always willing to lend someone a helping hand. I would love to see a world that gave people with or without a brain injury an equal opportunity to learn and live in the same society without judgements. ◗◗ Kimberly-Claire Leung
Positive behaviour support on the rise Synapse recently had the good fortune to speak with Dr Gary LaVigna, the Clinical Director of the Institute for Applied Behaviour Analysis (IABA) based in the United States. Dr LaVigna had just completed the Brisbane leg of the IABA’s “Positive Practices in Behavioural Support” training program that toured across Australia. Dr LaVigna delivered the series of four-day programs in tandem with his colleague, and fellow co-founder of IABA, Dr Thomas J. Willis. Dr LaVigna travels the world speaking with people about challenging behaviour and is a passionate advocate for the use of positive behaviour support for changing behaviour rather than punishment, a view he has held for the last 40 years. When asked if he is noticing any trends or
patterns emerging based on his discussions with delegates from around the globe he said yes. “I am noticing an increase in the up-take of positive behaviour support practice in a number of countries and this trend is comparable with the United States, Australia, New Zealand and the United Kingdom,” said Dr Gary LaVigna. Dr LaVigna and the IABA share a mission, namely to educate and disseminate information around the globe on the value of non-aversive methods for behaviour change. Much evidence exists that supports the use of non-aversive methods for behaviour change. If there is any resistance to this approach it is with respect to the finances involved. Despite this, Dr Lavigna believes that the long-term benefits of positive behaviour support are considerable. The IABA is currently examining around 400
WHAT IS POSITIVE BEHAVIOUR SUPPORT? Traditional approaches like punishment and coercion have been largely ineffective in dealing with behavioural issues. Positive behaviour support is exactly what it sounds like — a supportive, positive approach. Some key points of positive behaviour support include: • We should not try to control other people, but should support them in their own behaviour change • There is a reason behind most challenging behaviour, such as an unmet need • Everyone should be treated with compassion and respect regardless of their behaviour.
case studies and their outcomes clearly point to the merits of positive behaviour support. Looking for a new career direction, Dr LaVigna established the IABA in 1981. He and co-founder Dr Willis established the Institute with a commitment to provide the most advanced and highest quality services to support people with challenging behaviour. From their base in Southern California the IABA now provides a diverse range of services from behaviour management services, supported employment, supported living and supported educational services to individuals with developmental disabilities. The IABA will be celebrating its 30th Anniversary this year. With positive behaviour support practice on the increase clearly the IABA has an even brighter future ahead. This current training tour was Dr LaVigna’s twelfth visit to Australia. “I have visited many times and I love Australia,” he said. Synapse looks forward to partnering with the IABA once again and in seeing Dr LaVigna in 2012. ◗◗
Some key strategies in developing a Positive Behaviour Support program are: • Identify and understand the behaviour and what triggers it • Improve quality of life to reduce the incidence of challenging behaviour • Teach new skills to communicate needs • Develop positive intervention when challenging behaviours occur • Develop steps to manage crisis situations if needed • Support caregivers who are affected by challenging behaviours. For more information visit www.synapse.org.au and read the Positive Behaviour Support fact sheet.
30 / B R I D G E M A G A Z I N E
Personal Injury Specialist s
1800 997 938
Motor Vehicle Claims
Gerry Murphy A.M.
Workersâ€™ Compensation Medical Negligence Product and Public Liability Asbestos and Dust Related Diseases
Queensland Law Society Accredited Specialists Personal Injury Law
Professional Negligence Superannuation and Disability Insurance Claims
Luke Murphy John Chambers
WILLS & ESTATES Joanne Rennick Estate Litigation Estate Administration Wills
Matthew Holmes Jo Sorbello
Powers of Attorney Superannuation
Steven Herd Tania Boal
WILLS | ESTATES | ACCIDENT COMPENSATION
T 3303 9800 F 3303 9888 E firstname.lastname@example.org W www.murphyschmidt.com.au
130 Mary Street Brisbane Qld 4000