MAXIMISING RECOVERY Featuring Strategies for 14 common issues Making the most of rehabilitation Caring for someone with a brain injury 1 / BRIDGE MAGAZINE
Strategies for 14 common issues Practical tips for living with a brain injury
05 BRIDGE VOLUME 10 - March 2013 ISSN 1448-9856 General Editor: Contributing editors:
Barry Morris Clare Humphries Lisa Cox
Making the most of rehab
National Development Manager: Glen Farlow Synapse PO Box 3356 South Brisbane Q 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: email@example.com W: http://synapse.org.au
Getting into the right frame of mind to maximise your recovery
Bridge is produced by Synapse (trading name for the Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding. VISUAL DIFFICULTIES: Visit www.synapse.org.au and view the free online version which can be expanded on screen. DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. Synapse will not be held responsible for any injuries or damages that arise from following the information provided. Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse. Supported by financial assistance from
Caring for someone with a brain injury
INDEX 03 05 09 10 11 12 13 15 17 19 21 23 25 26 27 28 29
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Looking after yourself so you can care for others better
Rehabilitation after a brain injury Strategies for 14 common issues Predicting recovery Maximising recovery Making the most of rehabilitation In pursuit of happiness Learning to fly again The many faces of brain injury Learning to cope with MS The post-rehab slump No limits Caring for someone with a brain injury Going the distance I have a brain injury! International face of brain injury Chronic traumatic encephalopathy Managing medications
An introduction by Headway UK A guide to the best rehab techniques Why it is so difficult to do Turbo-charged rehabilitation What family members can do to help A general guide to smiling more Personal story by Rick Bowie Stories from a Queensland support group Personal story by Carole Thurlow Why it happens & what to do about it Inspiring personal story by James Tips from Headway UK Strategies for carers from Psycare What to say when they won’t believe you The famous are not immune A common problem for boxers & athletes Juggling those pills safely & effectively
bridging THE GAP
Jennifer Cullen, CEO of Synapse
Maximising recovery There are several very common questions once a person has reached a stable condition after a brain injury. Will there be a full recovery? If not, what level of recovery can be expected? What can we all do to ensure as full a recovery as possible? This issue of Bridge seeks to answer these questions. While predictions of recovery are often vague and difficult to make (see p.9), there is no question that appropriate support and rehabilitation are vital in the recovery process. The aim of rehabilitation is to improve and optimise the patient’s ability to function at home and in society in the face of the residual effects of the injury, which may be complex and multifaceted. An additional goal of the rehabilitation program is to prevent, wherever possible, but otherwise to diagnose and
treat, any complications (e.g. post-traumatic hydrocephalus) that may cause additional morbidity and mortality in this patient population. It is usually the cognitive and behavioural effects of a brain injury that can have the most devastating effects, so we have covered 14 of the most important strategies for dealing with common problem areas (see p.5). Some patients may need medication for psychiatric and physical problems resulting from a brain injury, and various medications are available that may decrease or moderate problematic manifestations of an injury without directly altering the underlying pathology. Great care must be taken in prescribing medications, as patients are often more susceptible to side effects and may react adversely to some pharmacological agents (see p.29). It is
important for the family caregivers to provide assistance and encouragement for the patient by being involved in the rehabilitation program. It may sound like a bad pun, but how well we do in rehabilitation is largely in our head. How positive or negative we are in our approach to life directly impacts on how well we will do in rehabilitation. Other factors such as determination, our sense of humour and spirituality play their part too (p.10). It doesn’t matter if they are famous people like Australia’s own Molly Meldrum or Senator Giffords in the USA (p.27), or lesser known but equally inspirational members of a local support group who shared their stories (p.15). This issue is dedicated to anyone on the difficult but rewarding journey in recovering from a brain injury.
AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS
QLD Synapse Tel: 07 3137 7400 Email: firstname.lastname@example.org Web: synapse.org.au
BrainLink Services Tel: 03 9845 2950 Email: email@example.com Web: www.brainlink.org.au
WA Headwest Tel: 08 9330 6370 Email: firstname.lastname@example.org Web: www.headwest.asn.au
NT: Somerville TAS Brain Injury Association of Tasmania AUS Injury Synapse is fundedBrain by Home andAustralia AUSTRALIAN NETWORK BRAIN Tel: 08 8920 4100 Tel: OF 03 6278 7299INJURY ASSOCIATIONS Care,Tel: 02 9808 9390 Community a joint CommonQLD Brain Injury Association of Qld Email: email@example.com Tel: 07 3367 1049 Email: firstname.lastname@example.org Web: www.braininjury.org.au wealth and State/Territory program Email: email@example.com Email: firstname.lastname@example.org providing funding Web: www.braininjuryaustralia.org.au and assistance Web: www.somerville.org.au Web: www.biat.org.au AUS Brain Injury Australia Tel: 02 9591 1094 Email: email@example.com Web: www.braininjuryaustralia.org.au for Australians in need. NSW Brain Injury Association SA of NSW Brain Injury Tel: 02Network 9868 5261of South Email: firstname.lastname@example.org Web: www.biansw.org.au ACT National Brain Injury Foundation Australia NSW Brain Injury Association of NSW
VIC BrainLink Services 03 98457600 2950 Email: email@example.com www.brainlink.org.au Tel: 02Web: 6288 1117 Tel: Tel: 08 8217 Tel: 02 9868 5261 Email: firstname.lastname@example.org Email: email@example.com Email: firstname.lastname@example.org TAS Brain Injury Association of Tasmania Tel: 03 6278 7299 Email: email@example.com Web: www.biat.org.au Web: www.nbif.org.au Web: www.binsa.org Web: www.biansw.org.au SA
Brain Injury Network of South Australia Tel: 08 8217 7600 Email: firstname.lastname@example.org
Somerville Community Services
Tel: 08 8920 4100 Email: email@example.com
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In the hospital
In a sense, the rehabilitation process often starts in the hospital phase. It is important to become familiar with the hospital’s departments, wards and key staff providing treatment for Acquired Brain Injury. Understanding medical terminology can be difficult, especially during times of stress. However, it is better for people to ask questions than to not understand what is happening. People often prefer to direct such questions to a person with whom they feel comfortable, such as a member of the nursing staff, a doctor or an allied health professional.
Rehabilitation after a brain injury A beginner’s guide from Headway UK
It is common for hospitals to hold meetings with family members and various members of staff involved in the patient’s care. These meetings provide a good opportunity for relatives to ask questions of specific professionals. It is often helpful if those attending prepare for these meetings by writing down the most important points or questions to raise. The best interests of patients and their families are easily overlooked during times of stress. This can occur unintentionally as a result of a lack of necessary resources, work overload or poor communication. Most hospitals provide support for families to obtain information and make decisions. The person providing this support is often the social worker. Coping strategies The following ideas are designed to help friends and relatives come to terms with the traumatic experience of having someone sustain a brain injury. • Acknowledge your personal reactions to stressful experiences • Try to reduce sources of stress in your life • Accept support whether it be talking things over or getting help with the housework • Talk with other people about your feelings and experiences as this can help you accept what has happened • Be aware other family members may deal with the situation very differently to you • Maintain a sense of normality and make a routine for structure in your life • Ring your local Brain Injury Association for advice on community services and support groups.
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Unlike most other cells in the body, brain cells are very limited in the ability to regenerate when they are destroyed. However, this does not mean that no recovery can occur. The brain is somewhat flexible and to some extent can reorganise itself to regain lost function. This is known as brain ‘plasticity’. During recovery, other areas of the brain can take over the activities of the damaged areas, and new nerve pathways can be established using undamaged brain cells. Engaging in activity helps these alternative pathways to develop. Rehabilitation aims to help the brain learn alternative ways of working in order to minimise the long-term impact of the brain injury. Rehabilitation also helps the survivor and the family to cope successfully with any remaining disabilities. Time scales for recovery & rehabilitation In the first month or two after a severe brain injury it is only possible to guess at the length of time that recovery will take and the likely outcome. All that is certain is that recovery is a slow process and will take months or years rather than weeks. Six months after the injury the picture will be clearer, but it is wise to wait until about
a year after the accident before making any important decisions regarding the future. After a year or so, one can be reasonably certain about the eventual degree of physical recovery. Psychological recovery, however, can take considerably longer, and it is usually these more subtle psychological problems that cause longer-term difficulties, particularly for family members. People do sometimes talk about there being a limited window for recovery after brain injury e.g. “recovery ceases to take place beyond two years”. However, this is now known not to be the case, and people may actually continue to improve for a number of years after brain injury. Indeed, many people say that they never stop re-gaining the skills that they lost following the injury. Nevertheless, the greatest visible progress does occur in the first six months or so postinjury, and after this improvement is often less obvious. Accessing rehabilitation services There are many different rehabilitation services across Australia. Choosing which rehabilitation unit to refer someone with a brain injury to should involve the clinical team,
the patient and their family. Once a referral has been made, the rehabilitation unit will usually carry out an assessment to make sure their service is suitable. There are often limited places available and long waiting lists. Specific details about the referral process, availability of places and funding options will be available from the unit. Taking up a rehabilitation placement is an important commitment, and it is wise to explore all the options, visit different rehabilitation settings, and ask as many questions as possible before a placement is confirmed. Rehabilitation settings Brain injury rehabilitation occurs in the following settings. Inpatient rehabilitation involves intensive specialist rehabilitation for people who are not yet ready to return home after discharge from hospital. Neurological rehabilitation centres provide an ideal setting for further treatment, where a structured rehabilitation programme is in place throughout the day. Outpatient rehabilitation suits people who may be well enough to return home and receive further treatment, either at a local hospital or at a separate rehabilitation centre.
Community rehabilitation usually follows after an inpatient rehabilitation stay. Some people may be transferred to a residential transitional living unit. Here people can develop their independent living skills so that they may be able to live in a place of their own. Others will go straight back to their homes, with a community rehabilitation team or outreach team helping them to make further progress; this may involve therapists working with the person in their home or community environment. The role of family members The British Society of Rehabilitation Medicine (BSRM) has produced guidelines on rehabilitation after Acquired Brain Injury. The guidelines recognise the important role family members and carers play in the rehabilitation process: “Family members are very often a crucial asset to the patient, providing both longterm support and a major contribution to the rehabilitation process. It is also important for the team to recognise that family members often have a special rapport with the patient and may detect subtle communication in advance of the professionals.
“Families can provide valuable insights into the patient’s character, choices and ambitions, as well as important information on the presentation of difficulties in the home setting. This is essential in initial assessment, and in the monitoring of rehabilitation gain, to minimise under-reporting of difficulties when the brain-injured person lacks insight”. (from “Rehabilitation following acquired brain injury: national clinical guidelines”, BSRM, 2003). What if there’s been no rehabilitation? If your relative has been discharged home without any access to rehabilitation, and you have reason to believe that they would benefit from it, there are still options available. You are perfectly within your rights to actively seek rehabilitation services, even if you have been told that there are none available or needed. The first thing to do is discuss the matter with your relative’s GP and/or consultant. They may be able to provide a referral. This article is reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to firstname.lastname@example.org to discuss any issues raised. Visit the website for great resources available for free download. 4 / BRIDGE MAGAZINE
Strategies for 14 common issues A brain injury can cause many cognitive and behavioural changes that can affect study, work, driving, relationships and living independently. These practical strategies from ABIOS can compensate for some of these changes in everyday life.
1 MEMORY & LEARNING WHAT THIS MEANS
• Difficulty remembering ongoing events, names, information, instructions, details of conversation, appointments and misplacing objects • Difficulty learning new tasks or information • Difficulty learning new behaviour or skills • Memory impairments may be short-term (recent information and events) or long-term (information or events over a lifetime).
• Use memory aids wherever possible, such as a diary, calendar, notepads, reminders, timers or alarms • Try to make lists and keep them practical and easy to find • Keep information and important items (keys, wallet, address book etc) in the same place • Use prompts and reminders to help memory – checklists, signs, another person • Repeat information, especially instructions or new information.
2 CONCENTRATION & ATTENTION
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WHAT THIS MEANS
• Reduced ability to stay on task for longer periods • May get distracted easily • May have difficulty doing more than one task at a time, or completing all the steps in a complex task • Easily off the task or topic of conversation.
• Keep tasks simple and short • Do one thing at a time • Remove distractions wherever possible e.g. noise, television, people • Plan shorter activities which are interesting • Use cues and reminders to bring attention back to the task or topic.
3 Planning & organisation WHAT THIS MEANS
• May have difficulty planning ahead for activities • May be disorganised • May not think ahead or anticipate consequences of actions or choices.
• Structure and routine will help in organising daily activities & tasks • Use aids such as a diary, notebook, or lists to help plan activities and, appointments, and to remind about birthdays, social events • Set aside planning time each day or weekly • Make sure instructions are simple and break down big tasks into small steps • Checklists are good for keeping on track.
4 Reaction times & information processing WHAT THIS MEANS
• May take longer to take in information, to think about things, make decisions, or to act • May have trouble in group activities or conversations e.g. keeping up.
• Allow extra time to understand new information and finish tasks • Plan for extra time for activities and tasks and set realistic goals • Allow more “thinking” time • Don’t rush or overload yourself.
5 Initiation & Completing Activities WHAT THIS MEANS
• Difficulty getting started with a task or activity • Difficulty with motivation and getting going with tasks and activities • May have difficulty following through once an activity is started at each new step or stage.
• Structure and routine will help in getting activities done • Use prompts to start and continue activities e.g. alarm clocks, visual reminders • Find a range of interesting activities to increase your motivation and interest • Help from someone else may help to get started and keep involved in an activity e.g. it’s more fun to do things.
6 Anger & Temper Control WHAT THIS MEANS
• Irritability, crankiness • Temper outbursts • Less control of frustration levels and temper • Verbal aggression or physical aggression towards self or others e.g. hitting, kicking, punching, swearing, threats • Property damage.
• Try to accept feedback from others – this can be hard, but you might need it • Ask for support and help from other people in improving your ability to manage anger e.g. family, friends, professionals • Look at triggers or causes, for example, do you get irritable when you are tired or have too many things to do at once? • Remove yourself from anger provoking situations until you can calm down, or avoid them where possible • Avoid people who “wind you up” • Avoid alcohol and other drugs, they reduce ability to control strong emotions • Remain calm as much as possible – use relaxation and other strategies to help you calm down • Discuss different ways of managing irritability and temper. CONTINUED NEXT PAGE 6 / BRIDGE MAGAZINE
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Strategies for 14 common issues ...continued 7 ability to manage behaviour WHAT THIS MEANS
• May act on impulse, before thinking through an idea or action • May not think about the consequences e.g. spending all money and having none left for bills • Saying things without thinking – may seem rude or abrupt or tactless to others • May express ideas or needs in inappropriate way, with inappropriate person or in the wrong situation.
• Use the technique “STOP – THINK – THEN DO” • Try to think ahead and plan for situations e.g. “what should I do when…?” • Ask for and think about feedback from other people • Think about the “social rules” in certain situations and what is “OK” or “not OK” • Watch for signs or cues from others.
8 self-awareness & insight WHAT THIS MEANS
• May not be aware of problems • May have trouble understanding changes and what to do about them • May not agree with others about impairments • May not be aware of other’s concerns.
• Find out information about brain injury, and how your brain injury has affected you • Ask for honest feedback from people you trust e.g. “Do you think I lose my temper more now …?” • Discuss with your rehabilitation coordinator or other professionals.
WHAT THIS MEANS
• Depression and anxiety can be experienced after a severe disability, and can also result from changes in circumstances e.g. loss of work, loss of independence, changes in relationships.
• Get good support from people around you e.g. family, friends, church etc and they know that support is needed • Find positive and rewarding activities • Link to professionals for specialist help e.g. GP, psychiatrist, psychologist.
10 Social Awareness & Empathy
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WHAT THIS MEANS
• May have difficulty with empathy for others • May lack awareness of feelings and needs of others • May be more focussed on own needs • May be impatient and want things immediately • May be demanding.
• Think about how others might feel and what they might want/need in situations • Work on your communication and relationship skills • Plan activities that build social and friendship relationships e.g. keeping in touch, remembering birthdays, asking people how they are going.
11 sexuality & behaviour WHAT THIS MEANS
• Expressing sexual needs and interests in an inappropriate manner or time, or with an inappropriate person • Sexual comments, innuendo and jokes • Inappropriate touching of others • Sexual propositions • Exhibitionism or masturbation in public.
• People will need to give you very clear feedback if your behaviour is not appropriate for the circumstances • Discuss sexuality and any issues with an appropriate person e.g. GP, psychologist, social worker, or with Family Planning • Keep sexuality a private matter.
12 Thinking & Reasoning WHAT THIS MEANS
• Inability to generate ideas or thoughts • Difficulty doing or thinking about something from more than one point of view • Getting “stuck” on ideas, topics, or behaviour • Difficulty changing behaviour • Trouble with comprehension and reasoning.
• Start with very small changes or compromises • Be prepared to think about or try a different idea or approach • Write down lots of different ideas and choices • Get suggestions from other people you trust and discuss options and benefits • Weigh up the “pros” and “cons” of any ideas or plans.
13 emotional changes WHAT THIS MEANS
• Difficulty controlling emotions e.g. inappropriate crying or laughter.
• Try to distract yourself by thinking of something else, or change the activity • Encourage others to ignore the laughing or crying until you gain control • Watch for factors such as over-stimulation, stress, and fatigue which can increase likelihood of the behaviour occurring • Distraction or relaxation techniques can help with these.
14 independence WHAT THIS MEANS
• May feel more socially isolated, lonely and or have fewer social relationships • Changes in leisure, social and work activities so less opportunity to see friends and family • May have less contact with friends from before the brain injury.
• Maintain links with as wide a range of people and activities as you can • Work on your skills in building relationships with other people • Keep involved in community and leisure interests and activities • Be prepared to join new activities or groups. Sometimes it is good to “give something a go” • First try doing things with support, and then doing them on your own.
This article is reprinted with the permission of ABIOS (Acquired Brain Injury Outreach Service). ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families. Its mission is to assist people with ABI in Queensland, their families and carers to achieve an improved quality of life and community integration through increased independence, choice, opportunity and access to appropriate and responsive services. Visit www.health.qld.gov.au/abios/ for a wide range of ABI fact sheets. 8 / BRIDGE MAGAZINE
Why predictions can be a guessing game after a brain injury
Making predictions of recovery can be difficult for any level of brain injury. A person with a mild concussion may be told they will have a complete recovery, yet may encounter lifelong issues with headaches, memory and fatigue. In other cases, doctors may predict little chance of emerging from a coma, yet occasionally patients will defy the odds and rebuild their lives to some extent, albeit with cognitive problems. Families and patients alike can be frustrated by lack of knowledge about the future. It is important for everyone to be optimistic but realistic about recovery, and to develop a good understanding of what is or isnâ€™t possible. Some families with a loved one in hospital have likened this to hoping for the best while preparing for the worst. Why arenâ€™t predictions always accurate? Physical injuries do not give an accurate picture of the degree of brain injury sustained. The victim of a terrible car accident may have numerous fractures, yet there can be less brain trauma than someone who fell over in the bath. 9 / BRIDGE MAGAZINE
While MRI scans have greatly improved the ability to spot microscopic damage to brain cells, only rough estimates can be made about the extent of damage. The brain is an incredibly complex organ, so any predictions of recovery can only be made as estimates. To further complicate the issue, recovery depends on many factors such as the degree of family support, availability and quality of rehabilitation services, and the personal resources and personality traits of the person with the brain injury. For example, people who did well in the educational system and those with very determined, motivated personalities usually perform very well in rehabilitation.
quite a few years after the injury. This can be increased further simply by continuing the rehabilitation process, such as learning new memory strategies, ways to manage emotions, and working on social skills.
How long does the recovery process take? The brain does have a limited ability to heal itself. For a long time it was believed this process occurred over two years, with the most rapid improvement usually in the first six months as swelling and bruising of the brain subside. While this is often the case, some people experience gradual improvements for
Hard work and hope A brain injury is very different from other conditions where full recovery is often the norm. The bad news is that often a 100% percent recovery is not possible. The good news is that hope, hard work and a systematic approach will maximise the recovery that is possible, and can still lead to a fulfilling life.
Importance of rehabilitation Rehabilitation is extremely important in maximising the recovery process. But it should be noted that discharge from rehabilitation is not the end of the process. People who make the best recovery usually continue to apply the skills and strategies they have learned for years afterwards, if not the rest of their lives. So while the brain is no longer healing itself, new skills are learned to compensate for lost abilities.
Maximising recovery Which people are likely to recover the most and why Brain injury is a major public health problem worldwide, and when it occurs, it intrudes upon the lives of every member of an extended family. Just as the person who is injured is changed, all others who care about that individual are affected in a variety of ways, some positively, while others negatively. What are some of the forces at work that help people cope with these inevitable changes? Is the glass half full or half empty? In any catastrophe, people will react in a wide variety of ways. Some will groan and feel it just confirms for them that the world is an unjust place full of misery. Others will smile and say ‘what doesn’t kill you can only make you stronger’. Not surprisingly, it is the latter group who make the best recovery after a brain injury. They see negative situations as a time to grow and develop. They also tend to be more selfless and concerned about others, and may say the best way to deal with one’s own difficulties is by helping out someone in a worse state. “In some cases, two people with the exact same stroke-related deficits can have very different results,” says Lynn M. Grattan, Ph.D., Associate Professor of Neurology at the University of Maryland School of Medicine in the USA. “One person might return to work and social and leisure activities, while the other may end up on permanent disability. Our research is the first to demonstrate that in many cases, personality has a greater influence than the brain injury itself.”* Even if this isn’t your natural personality, having a brain injury can mean this is a crucial time to develop these traits. Changing the way you view the world and yourself in a more positive way can be a lengthy difficult task but
can pay huge dividends in the long run. Laughter as the best medicine? Many families use humour to sustain them through difficult times. There is certainly nothing funny about brain injury, but finding reasons to smile each day is a factor in health and raises the level of optimism. Research shows that our attitudes and beliefs have a strong influence on the body’s ability to heal itself. If in fact that statement is true, then it stands to reason that finding ways to approach our problems with humour and greater optimism should reduce the negative impact and allow us to deal more effectively with them.
happened. This can be a very hard process after a brain injury as a family comes to grips with a car accident, cancer, near drowning or sporting injury that has affected a loved one. Many families and survivors say that a spiritual or faith-based approach helps them through the recovery process. Some families with no religious affiliation and little or no experience with spiritual acts found that when faced with tragedy involving a family member or dear friend, they found themselves praying, possibly for the first time. Taking a spiritual path can often assist people to make the most of learning from the experience.
Determination 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, and even if improvement is painfully slow remember progress is better than staying where you are. Some are naturally inclined toward being high achievers — their genes and family upbringing lead them to naturally approach the brain injury as a problem to be overcome through hard work. These personality types usually approach their rehabilitation in a similar vein and reap the rewards with time. Those of us not so inclined can still choose to take a similar approach by setting and prioritising goals, implementing plans and making the most of support networks to stay motivated.
Whatever works for you Some families and survivors manage catastrophic events extremely well, surviving with much less effect than others whose negativity seems to sabotage efforts to improve the final outcome. Much of this comes down to personality types, and many of us simply find it incredibly hard to shrug of despair and depression. However, having the right attitude is not acting happy when you are not. It is simply choosing to not give in to negativity, and finding the strategies that will help you do this. The “whatever works for you” strategy does make you an active participant in your own outcome. 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.”
Spirituality When faced by a tragedy, part of dealing with the grief will be coming to terms with ‘why’ it
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Making the most of rehab
The brain does have some capacity to repair itself, but rehabilitation is crucial to learn how to compensate for abilities that are lost. Even when survivors are very motivated, there can be periods of apparent lack of progress. Here are the keys to making the most of your rehabilitation. Attitude Those who make the most of their recoveries tend to have an optimistic outlook, are usually more giving and selfless than most people, and don’t tend to give up easily. Even if this isn’t your natural personality, this is the perfect time to develop these traits. Those who do the best usually look upon negative experiences as a chance to grow and develop themselves further. Structure Most of us lead highly structured lives: we wake, sleep and work at the same times each day. This kind of structure allows us to put most of our lives on automatic pilot and reserve creativity, memory, and novelty for more important areas. It is common for life to lack structure after a brain injury. People may nap throughout the day and then can’t sleep at night, eat meals at varying times and therefore can’t recall if they have eaten at all. It is common to leave things in different places, and never find them when they’re needed. Structure in our lives reduces the need to continually make decisions, vastly increases capabilities, and significantly reduces the demands placed upon the caregiver. Build a 11 / B R I D G E M A G A Z I N E
weekly timetable of activities and rest breaks, then use memory prompts to reinforce routines. Familiar settings A brain injury often creates difficulty in learning new information and generalising new skills from one environment to another. This is why the most effective rehabilitation occurs in the home setting. Where possible, ensure that whatever rehabilitation has occurred away from home can be reinforced in the home setting. Feedback on behaviour If there are behavioural issues, the best thing the family can do is give non-judgemental feedback. If inappropriate behaviour is accepted, their family member can become increasingly isolated from human contact and the burden on the caregiver can become immense. Provide plenty of positive feedback too – it is easy to forget that many people find recovering from a brain injury the biggest challenge of their lives. Support groups Support groups play a vital role in avoiding social isolation, talking through issues with others who understand, and sharing information and resources. This applies not only for anyone who has acquired a brain injury, but also family members and carers. Contact your nearest Brain Injury Association to see if there are groups in your area. If not, there are online groups and forums to explore. Get involved Be as involved as possible during the formal rehabilitation process – ask questions, attend family conferences and learn all you can
while your family member is in a structured setting. The rehabilitation team needs to hear your opinions and concerns. If you feel uncomfortable voicing your concerns, find someone you trust to speak for you. Make sure you are provided with a sound and realistic discharge plan. Once home, don’t sit back and assume everything will automatically fall into place. Establish a routine (structured environment), consistently reinforce the discharge plan, and make sure that your family member has control over those aspects of their life that are safely manageable. Record 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 required. Injury prevention A brain injury leaves your brain more susceptible to future injury, so prevention is important. Impulsive people who have poor judgement may repeatedly place themselves in dangerous situations and then be unable to cope. Tips for injury prevention include: • Avoid exposure to toxic materials • Use non-slip mats in the bathroom and ensure you can’t trip on rugs etc in the home • Wear helmets • Avoid alcohol, nicotine, and other drugs. Everyone can win Information, education and support, are the three most important aspects of rebuilding life after brain injury. Add to that an equal measure of love, and it can be a win-win situation.
In pursuit of happiness Annoyingly elusive for many, happiness can be a rare state following a brain injury, not only for the person who has acquired it, but their partner, family and carers can experience difficulties too. Understanding and seeking happiness can be a proactive way to fight depression and despair which can encroach on our lives. What makes people happy? If money doesn’t bring happiness, what does? Recent research asked people this very question and came up with the following sources of happiness: • Relationships with children • Friends and friendships • Improving the lives of others • Relationships with partners and romance • Degree of control over one’s life • Doing fun things in one’s leisure time • Relationships with parents • Spiritual life • Holidays. Bring on Charlie Chaplin It’s true, laughter can be the best medicine. But often there is little to laugh about after a brain injury. A common after-effect can be a difficulty grasping humour as it involves surprisingly complex cognitive skills to appreciate irony and sarcasm. Some will find they have regained an appreciation for slap-stick comedy, and it may be worth seeking movies with a simpler approach to getting laughs. Every time we laugh it triggers a chemical boost which is very effective in fighting negative emotions. What’s happy according to psychologists If money doesn’t bring happiness, what does? Commit random acts of kindness — being generous and being thanked by others always boosts chemicals in the brain that will cause you to smile. Focus on enjoyable moments. There are always positive things happening that we take for granted — the taste of a cool drink after exercise, sun on the skin during winter, the tang of a good Thai curry. Don’t take these for granted! List the good things that happen to you. Every day write down a few things you are thankful for, even if it is only a lack of torture or starvation in your life.
Find practical ways to reduce stress. As the old saying suggests, use your strength to change the things you can, and your patience to accept the things you can’t change. Forgive others. Don’t hold on to bitterness as this will usually only hurt you. Spend time with friends and family. Research consistently shows that this is far more important to your happiness than money, status or even good health. Thank others who have helped you, or have been an inspiration. They will be pleasantly surprised and you will feel uplifted too. Work out the new you There are many changes after a brain injury, and these often involve the personality. Everyone, including the survivor, may wonder who this new person is, and often have trouble accepting the new identity. This is particularly the case when many of the changes may seem for the worse. How we see ourselves is an integral part of our happiness. One of the most challenging tasks is learning to accept this post-injury identity, and where possible appreciate the new qualities it brings. This, of course, can be a huge challenge. For someone with debilitating fatigue, it may be learning to smell the roses and learning to find self-fulfillment in things that don’t require achievement through employment. For those who struggle with anger or poor social skills, it may be working hard at self-development and then passing on their hard-won experience to others. In fact, many who have survived a brain injury find that helping others who are new to this disability brings a huge sense of satisfaction and happiness. It may provide some sense of meaning as to why this injury occurred (it allows you to help others). It will help take the focus off yourself, and research consistently shows that selflessness has strong links with happiness. Finally, you will inevitably encounter those who have it worse than you (in a coma for example) which helps in realising maybe your situation is not so bad. 12 / B R I D G E M A G A Z I N E
Learning to fly again Rick Bowie on how hope, positive thinking and faith maximised his recovery
In 2001 I had a substantial cerebral haemorrhage. My family was told to say goodbye to me because few survive such cranial shock. I have tried for quite a while to work out why my recovery has been so startling. Like any recovery, it is quite complex, and defies a simple explanation. I often wonder what the factors were that enabled me to get to where I am now. At the time, my doctors were not sure I would live. When I eventually regained consciousness I was seriously damaged, told I would never be able to work again and I should accept that I was functionally impaired. Tough love & family support When we moved to Queensland, we were unaware of any rehabilitation facilities available to us, and the task of getting me going again fell to my wife. I attribute a large part of my recovery to Joyce’s tough love. It was she who would stand at the foot of the bed saying “Get out of bed NOW!” This was the signal that we were going for a walk. How I hated these excursions! I would dread turning a particular corner, because that indicated that we were going around a big block instead of the smaller one. Eventually I graduated to the beach. The 13 / B R I D G E M A G A Z I N E
major drawback here was that my walking stick was useless because it simply pushed into the sand. I had to throw it away in the end because I would get so frustrated. A substantial distance along the beach is a parachute drop zone. I would look up to watch people descending, get dizzy, and fall backwards. In the end I discovered it was safer to lie down on the beach so I could look upwards. My children were fantastic. They were always there for me, with a phone call, or a note, or a surprise present. One of them paid for a personal trainer to visit me weekly and work rehab type stuff with me: balance, stretching and so on. I still do the exercises that the personal trainer gave me. Setting goals Before my stroke, I was a very goal-oriented person. I was used to setting goals, and teaching about their value. In hospital I asked my rehab specialist to help me set some goals for recovery. He was aghast and said something like “you can’t set goals about getting better!” This really annoyed me, and the comment niggled at me until I set some goals for myself. In the beginning, they were really small goals, like walking daily to the gate of the house next
door and back again. Then two houses the following week, and so on. I soon discovered that the physical goals were easier to attain than the interior ones. I set a goal to read a chapter of a book a week. I soon found that reading was to become my nemesis. I would read a paragraph, and then, because I couldn’t remember what I’d just read, I would cycle back and start again. Leaving a page overnight simply meant that I would have the pleasure of reading it all again the next day. I began a Certificate 4 in Personal Life Coaching. It took me a little longer than usual, but eventually I managed to read the material, be evaluated, and graduate. This was my first, personally organised, major victory in recovery. As an aside, a month ago, in July 2012 (11 years after my CVA) I read a long novel over six weeks : “Hawaii” by James Mitchener. Positive stories & faith During my minimal rehab in the hospital we were told that I would never work again. A specialist suggested to Joyce that I move into a nursing home, where I could be cared for until my demise. And so the list goes on of things I was never meant to be able to do again. I am reminded of what my friend says about the stories people tell. In his education
me was (and is) that I have an incredibly poor self-image! What a wonder passing this test was. It helped to give me the frame of mind that says I can do anything, including survive my stroke back in 2001. Taking on challenges I noticed when I subsequently joined the navy, that similar tests/tasks are offered in training like ropes courses. Unlike any number of recruits, I was able to leap out at a trapeze when we were 40 odd feet above the ground. It served me well in my pastoral relationship with the young testosterone-filled recruits! I have also noticed that in so called reality shows like “Biggest Loser” the contestants late in the series are offered various tests like bungy jumping and tandem parachute jumps. Swimming with sharks is another challenge which many take up at various tourist destinations. These are examples of challenges which, when accepted, can give both tools and courage to overcome difficulties.
consulting practice, he teaches people about the power of the stories people tell, and their power over us should we believe them. I shudder to think what might have been if we accepted the specialist’s story, and chosen the nursing home alternative! What was it that helped me survive with the quality of life I now have? I’m not sure if I believe in an interventionist God. However, I do believe that faith in the God we know gave me paradigms of hope that helped me to believe that anything is possible. Hope I am glad that my doctoral dissertation was about hope. That work gave me an important tool to work with. I reckon that hope simply means that something is possible — not necessarily probable, but definitely possible! My natural disposition is to keep looking forward. Psychologically, my preference is to keep looking forward to what might be, rather than to keep looking at what is. This gives me the facility to dream about a time when I will be fully functioning once more. It may not happen, but it is possible! When we moved to Queensland I started going to a massage therapist weekly. I think this was the greatest contributor to my physical well
being of anything that I did! Fighting negativity I think that my knowledge of the brain technology of Neuro Linguistic Programming gave me skills and techniques that I was able to work on myself. One example of this is that negative inner voice. I still find it easy to slip into a severely self-battering negativity. This negativity is one of the tools we use to set limitations on ourselves. I have specific tools to use when this begins to turn on me. What people don’t see is my constant struggle to keep treading water successfully. Every now and then the water laps over my nose, and I react negatively. I guess this is part of the personality change which dogs me, and is a predictable part of Acquired Brain Injury! I remember in my Neuro Linguistic Practitioner training, one of the last sessions was when the trainers set each of us a task which, individually, we would find almost impossible. My task was to strip in front of the class. It took about half an hour of supporting comments, and offered clues as to how to do it before I got to the stage of down to my shorts. Then to my jocks. I had started to take these off when the trainer stopped me, satisfied that I had passed this crucial test. The essence of it for
Problem-solving Problem-solving was another area I worked on, especially in relation to my computer. Probably the biggest event for me since 2001 was re-entering the workforce for three years. I was in a very supportive environment, and to a certain extent was able to determine when I would retire. I’m not entirely sure if many people in my work environment during that time fully realised how momentous this was for me. Collectively they provided me with a time to continue healing. I think I was able to relate on a caring and listening level to all. I like to think so, anyway! I eventually ran out of puff, and after a car accident my neurologist in Brisbane instructed me not to drive any more, and threatened to report to my employer if I didn’t retire. A “walk out or be carried out” was her comment. There were also some alternative therapies I pursued throughout. Since I don’t eat seafood, I decided to take omega 3 supplements on a kind of mega dose regime. Omega 3 apparently is seen as therapeutic for the brain. Losing over 17 kilograms in weight after we moved to Queensland was a great victory. So there is a grab bag of therapies and practices which have added up and brought me to where I am at the moment. And it is a good place to be! Rick Bowie has been a contributor for many years and his constant theme of hope has encouraged many readers. 14 / B R I D G E M A G A Z I N E
The many faces of brain injury
My name is Lynette Letic I am a first year photography stuedent at the Griffith University Queensland College of Art. One of the many things I have learnt so far is that photography is the most powerful method of storytelling. For a particular photography
June 1986, I died. I lost my mother
and brother in this car accident. I suffered the loss of all memories from about 10 years before the accident to three years after the accident . . . so I have very little memory of my brother. Since my brain injury I am more open-minded. With more of an understanding of people around me, I have started to accept other people’s feelings and emotions. Before this accident I feel that I was narrow-minded.
I was an IV drug user
for many years. I had pneumonia and suffered from a massive heroin overdose which resulted in a severe hypoxic brain injury. I'm not able-bodied anymore . . . I had to learn how to do things by myself. When people know you have a brain injury, they think you are stupid. It's very isolating . . . you don't get a partner.
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assignment I decided I wanted to visit a STEPS meeting with my dad to meet other people with Acquired Brain Injuries and hear their stories. I met a group of ten people, eight of which I had the chance to sit down, talk and listen to, and then photograph. I took portraits and
I had no heart beat for five minutes because of a severe asthma attack. I was 20 years old at the time. This year I’m 47. I’ve been living on my own since 1990. I had to learn to do everything by myself.
accompanied them with quotes of the people I met, who had told me how they acquired their brain injuries and how their lives had changed because of that. Meeting these eight individuals was one of the most moving experiences I’ve ever
had. They are all such honest and strong individuals. Each individual’s stories have potential to inform, empower and most importantly raise awareness about this invisible disability, and especially altogether, I feel that they are even more powerful.
I got my brain injury
from an aneurism that ruptured, reformed and ruptured. I lost my short-term memory and I am also blind in my right eye. When I was in hospital I was in a wheelchair for seven months. I live by myself and find it hard sometimes because I will go out and get lost because I forget where I am and how to get home.
I had a brain bleed,
an aneurism. I was 43 years old and I had two aneurisms and one decided to pop. Because of my brain injury, doctors have said no flying, no driving, no anxiety and no alcohol. I can’t leave Brisbane. It gets boring sometimes but I take every day as it comes.
The day I fell down
I had my accident
the stairs in my house at 2 am was the start of one of the toughest journeys of my life. “Speed” is not brain injury rehab’s middle name, “Stamina” is. If I had a dollar for every time I did my required exercises . . . I always knew no matter how hard it got I had to keep at it.
30 years ago. I was coming home from work and I crossed the Gold Coast highway. I woke up in hospital three weeks later. I seem to have trouble joining in with other people, that’s why the STEPs group is important. I am going to try and find out from Centrelink if there is any course I can do.
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Learning to cope with MS by Carole Thurlow
An abnormal brain function which the whole family has to deal with
Life is difficult when faced with a diagnosis which affects your body and brain function, but after the depression, the hurt, and the uncertainties, there is a place where you can find a new peace, new friends, new goals to aim for, and a place to smell the coffee. This is a small slice of my journey living with multiple sclerosis (MS) – I am a stubborn woman, I have to be, I have to keep trying. After the diagnosis Life as I had known it had just stopped! Ground away bit by bit, chips were flying everywhere; my mind was swinging from disbelief to bitter denial. I wallowed in months of depression and uncertainty. I slept with a towel over my pillowcase each night and cried. Cried and wailed, bit the pillow and waited for sleep to come. Anyone who has faced a serious health problem will understand the feelings that swamp you when you are given such a diagnosis. It is hard not to think outside of the fact that all you’ve known and loved has been lost. If you are a mature adult, you can at least be grateful that you’ve had a good, full life. It is tragic being a young person with your life ahead 17 / B R I D G E M A G A Z I N E
of you, and a lot of people diagnosed with MS are young with small children. I feel their journey would be a lot worse, but they have to face similar decisions to mine. With luck they have good family support to help them cope.
around and see that while you were hiding, the sun was still shining, flowers bloomed, the sea still rose and fell. All the basic things that you used to love are still there. Go back to the things that gave you joy and rediscover them.
Trying to accept the new me My life became a nightmare as I lost a job after 30 years in the position, a marriage of 29 years and my lovingly renovated home. I had to try to make decisions that would help me and not hurt those I loved too much. Continual guilt, anger and crying was very debilitating, but you still have to move on. You just can’t let it rule your life forever. Somewhere you have to find the strength to make those decisions that will let you take your life in your own hands again and start taking those first steps.
Fantasy is a break from reality Sometimes your mind won’t let you think clearly, even just thinking can be hard. A retreat into fantasy often helps, and depending on your musical, literary or visual whimsies, a little trip down fantasy lane can ease a bit of the pain. I used to love science fiction in my youth, and nowadays the fantasy genre is also putting out some really good material. Whatever your fancy is, fantasising about the things you love is always a soul soother. I’ve always loved nature, the trees, the bush land, crawling and flying things especially. As a child I would go through the bush at home and bring back things I had found. Friends’ pets and a small puppy give me great joy. No longer able to walk a dog of my own, I borrow pets when I visit those who have them. I’ve learned to take comfort from the simple things in life. I nurtured a monarch butterfly from a caterpillar. It had been attacked by some pest and had a pit in its skin. The chrysalis also had
Being on my own I spent a lot of time alone thinking. I know anger and regret played a major part in my life back then. But you can’t keep yourself in that box. A time comes when you know that life has to go on, so you shake yourself out of the black hole of depression, make a positive decision to move on, and find a place where you can explore a new you. It becomes possible to look
a fault in the cocoon, as it hatched I watched in fascination as it pumped up its wings, and its right hind wing was bent and had a small fold in it. But, it could still fly, albeit with a wobble, just like me. Family and friends We share special occasions and everyday activities, and they are always just a phone call away. My family members are wonderful, they give me strength to cope with my ups and downs, and don’t let me get buried in despair. They also give me space when I need it, and sometimes you need just that. My new life is as different from my old life as could be believed. A new land, new home, new activities, all of which brought new friends too, if you allow it to. You can’t sit at home and expect them to come to you, you have to go out and meet new people. Be daring, smile at people in the supermarket, at bus stops, and car parks. It’s surprising how just giving a smile often gives you one back. Hobbies & passions Music is very important to me. I’ve discovered YouTube music videos, and a dear friend is a drummer and gave me some lessons; I’m afraid that my feet don’t do a good job on the bass drum, too weak and disorganized to hit the pedal with the right rhythm, but I can do a great rhythm with my hands. I’ve always loved dancing of all sorts. I learned to belly dance with a fantastic group of women, who were a great support. African music and dancing are another recent interest. Now I dance around the house with my walker, doing anything that the music and my muscles let me do. I also dance in my memory or with a very caring partner who can hold and support me – it feels so good. I’d always wanted to learn to paint, so I
joined the local art group. What an interesting lot of people they are. We have fun discussing our failures as well as our successes, and the different types of art media will keep me busy for years to come. I’m very proud of the six by six foot mosaic panels put up at the jetty on Russell Island. It was open to all residents on the island, many of whom gave their time and expertise freely, and became new friends. The end result was spectacular. Photography now is new to me again, but it took some lateral thinking to be able to get the close shots of wildlife and nature I wanted. One needs the correct tools for the job! I need tools now for most things I do, but they are available, and I happily use them to give me my freedom. Thinking sideways Being a DIYer, it was a huge blow when my health prevented me from doing the work I’d always tackled so happily. If you can’t do something the way you used to, think “sideways” about how you can, and give it another go. I invent new tools and machinery in my mind to help myself and other people who don’t have full use of their bodies anymore. Life can be great I am so grateful for all the new friends who share my life, without them I would not be in this interesting and exciting place. I have a loving partner now, something I never expected to have in my life again; he’s a wonderful caring man who puts up with my ups and downs, but is always there if I need a hand. I have learned not to be afraid to try. You will never know if you can succeed until you try, as usually these things don’t just come to you. I’ve learned to give anything a go, to try new things, to accept my shortcomings, but not give in to them. So give life another go, it can be great if you try! Photography by Herb Parkin and Alyke, best of friends
Living with a brain injury
I have a lot of trouble dealing with people in social settings. When I’m relaxed, I talk too much, which throws people off. Otherwise, I stay quiet and then they think I’m not interested in them, or too shy. Why can’t I find the middle ground? Should I say something, or just let them think I am weird? No matter what I do, I come across as strange. Mood swings happen every day, from normal to depressed, as I think about past friends and how I lost them and how some had made fun of me behind my back. I live with my best friend who cares for me sometimes and helps me with housekeeping and cooking. I wish I didn’t get these headaches. I wish I had my personality back and maybe be able to make friends again one day. I wish I could stop the bad memories affecting me so negatively. I wish people believed me when I told them the problems I experience. Above all I wish I had never acquired a brain injury. People judge from physical looks, and I find it hard for people to believe me that I really do have a brain injury. In more cases than not, I am not believed, or I don’t see them again. by Perry
The brain is made up of billions of nerve cells through which messages are transmitted by a combination of electrical and chemical activity. It weighs around 1.3 kg and is cushioned by cerebrospinal fluid. This fluid circulates around the brain and through a series of cavities called ventricles. The brain makes up only two percent of the body’s weight but uses 20% of the oxygen supply and blood flow. In fact, the electrical impulses generated by the brain are strong enough to light up a 60 watt bulb (don’t try this at home!). Brain cells begin to die if they do not receive oxygen after three to five minutes. The cells of the nervous system are quite fragile and need extensive protection from being crushed, being infected by disease organisms, and other harm. It is this fragility that makes the brain so susceptible to injury.
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The post-rehab slump Is this as good as it gets? People often make excellent recoveries after a brain injury through a positive attitude, hard work and family support. But once the official period of rehabilitation is over there can be a sudden slump, which can result in depression, despair and suicidal thoughts. The crash came three years later. I’d always been a really positive person and I threw myself into rehab. The doctors were amazed at how well I did. Even after two years I kept working on new strategies, although my brain had ceased to improve at that point. Then suddenly I came to a point where I couldn’t be bothered anymore. I tried to kill myself last year, and my family got me to counselling. I don’t think it’s helped – there’s just no point really if I can’t work or make friends. During my rehabilitation I was pretty positive about the future but there’s nothing now. This is it. No more improvement. I know I should be happy, and I was for a long time. I’m one of the lucky ones. A mild brain injury, a big recovery and I’m even back at work, my family is supportive and most of my friends still hang around. But I’ve lost big parts of me forever: my memory, energy to do things, and my sense of taste and smell. A year after discharge the loss hit me and I’ve lost the plot since then. A major reason for the post-rehab slump is psychological. The survivor is told that a positive commitment to rehabilitation will maximise results. This is a clear goal, and more importantly it is usually easy to see the progress resulting from hard work. The brain does its best to heal itself to a limited extent for at least a year or two after the injury, which contributes to a sense of progress. Even beyond this point, the survivor can still make improvements by working on the strategies that will compensate for the cognitive deficits – memory prompts, anger management, pacing themselves and relaxation techniques.
A famous brain injury
You may have heard of Phineas Gage, whose Acquired Brain Injury is possibly the most famous case worldwide. In the early days of the American railroads, he was responsible for using a heavy tamping bar to compress explosives into holes drilled into rock. Unfortunately, one day this triggered the explosives and the bar shot through his left cheekbone and exited the top of his skull. To everyone’s amazement, he survived and gave the medical community insights into frontal lobe damage. As with many cases of frontal lobe damage, there was little evidence of change in Phineas in terms of his ability Image from the collection of Jack and Beverly Wilgus
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to speak and move around, but his medical report stated that: ...he is fitful, irreverent, indulging at times in the grossest profanity (which has not previously been his custom), manifesting but little deference for his fellows, impatient of restraint or advice when it conflicts with his desires, at times pertinaciously obstinate, yet capricious and vacillating, devising many plans of future operation, which are no sooner arranged than they are abandoned in turn for others appearing more feasible. Previous to his injury ... he possessed a well-balanced mind ... was energetic and persistent in executing
all his plans of operation. In this regard his mind was radically changed, so decidedly that his friends and acquaintances said he was “no longer Gage.” (Valestein, 1986 p.90) These changes saw Phineas leading a lonely life, estranged from society by his behaviour. Sadly, so many years on, this is still a common outcome for many after a severe brain injury as there are still very few support services for survivors, despite the huge advances in medical knowledge and procedure since the times of Phineas. Like to know more? Go to http://www.deakin. edu.au/hbs/GAGEPAGE/ for the full story.
a short story about POTS A water bearer had two large pots, each hung on the ends of a pole which he carried across his neck. One of the pots had a crack in it, while the other pot was perfect.
But inevitably there comes a point where visible progress tapers off, and it is apparent that this is as good as it gets. The survivor has been focussing so much of their time and energy on this goal of recovery, and now it has been reached. The logical step is to set a new goal, and this is the point where the limitations of the injury are so apparent. Where to from here? No matter what the new goal is, it will be limited by the effects of the brain injury. Employment may not be possible, or only at a drastically reduced level. Any big project will be difficult due to the impaired ability to plan, concentrate and remember. Goals involving social activities will be hampered by reduced self-confidence, social skills and energy levels. Who is this stranger? Particularly for those who have done well in their recovery, this new self can be very difficult to accept. Despite being told things will never be the same again, there is often the secret hope that life will eventually be back to normal with enough hard work during rehabilitation. Being confronted by the reality of this new self can be a crushing disappointment after many months of measurable progress. Some describe the new self as a stranger living in their skin, and knowing this will not change can be hard to accept. The brain injury itself can add to the impact of this disappointment as anger, depression and intolerance of stress are often much harder to handle post-injury.
Perseveration Perseveration may be defined as repetitive and continuous behaviour, speech or thought which restricts new learning and adaptive functioning. Perseverative disorders were first identified and described in 1895. Since then, the term has been used in literature to label the inappropriate recurrence or continuation of a behaviour after a distinct change in task requirements. Over the years, perseverative behaviours have been frequently observed in a variety of brain disorders including Alzheimer’s and Parkinson’s disease, aphasia, schizophrenia and Acquired Brain Injury. Perseveration produced by brain injury is exhibited in many different forms. Over the years, investigators have generated various classification groups and labels to categorise the wide
At the end of the long walk from the stream to the house, the cracked pot was always half empty. For two years this went on, with the bearer delivering only one and a half pots full of water to his house. The perfect pot was proud of its accomplishments but the poor cracked pot was miserable that it was able to accomplish only half of what it had been made to do. It spoke to the water bearer one day. “I am ashamed of myself, this crack in my side causes water to leak out all the way back to your house.” The bearer said to the pot, “Did you notice that there were flowers only on your side of the path, but not on the other pot’s side? That’s because I have always known about your flaw, and I planted flower seeds on your side of the path, and every day while we walk back, you’ve watered them.” “For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house.” Moral: It’s the cracks and flaws we each have that make our lives together so very interesting and rewarding. You’ve just got to take each person for what they are, and look for the good in them. Accepting the new self Particularly for those who have done well in their recovery, this new self can be very difficult to accept. In a way this is the final stage of rehabilitation and often the hardest. Coming to grips with this new identity and even learning to appreciate it is a very difficult step, and many people are unable to make it. For some, the answer is focussing on a positive attitude. Cognitive deficits are viewed in a different way to see the strengths that can arise. An inability to work means opportunities to develop hobbies such as art or gardening. Lack of energy means taking more time to ‘smell the roses’. Wrestling with depression gives an insight into the pain and suffering of others. Other survivors have made sense of their experience by seeing how they can help others. They may attend or even initiate a support group where they can share their hard-won lessons with others, or write of their experiences. For those who can work, an option is casual work supporting others with a brain injury. range of perseverative behaviours. Despite some variation in classification labels and differing views about the underlying neuromechanisms, the cognitive and neurobehavioural characteristics of perseveration described by each author were significantly similar for three basic categories of perseveration. These three basic types are: • Continuous perseveration (inappropriate prolonged continuation and repetition of a current behaviour) • Recurrent perseveration (unintentional and inappropriate repetition of a previous behaviour to a different current task demand) • Stuck-in-set perseveration (inflexible maintenance of an inappropriate cognitive-behavioural response in the face of changing task requirements). In continuous perseveration, people become locked into a specific activity and seem unable to voluntarily stop themselves. An example of continuous perseveration would
For others, a spiritual approach or commitment to self-improvement may be the key. Each cognitive deficit is seen as an opportunity for self-growth and further development, not just as a disability. Remarkably, people often find that even many years post-injury, they still gradually improve in some areas with this approach. Some even come to appreciate how a brain injury has made them a more thoughtful, stronger person because of the many challenges they have faced and worked through. What the family can do Families can help their loved one by putting strategies in place to avoid or lessen the postrehabilitation slump. Work with them on developing new goals and activities before rehabilitation tapers off. Contact your State Brain Injury Association (see page two) for support groups and activities that may exist in your area. A psychologist or neuropsychologist can also help the survivor with their new identity. As one survivor put it, “For survival we must let go of what was, in order to become what we will be”. be someone sandpapering a table until they went through the wood completely. An example of recurrent perseveration would be asking someone to draw a cat. Upon asking them to draw a car or a house they would keep drawing a cat for each request. Stuck-in-set perseveration is often encountered in brain injury assessment and rehabilitation. It often manifests as a failure to inhibit or stop previously established maladaptive behaviours and replace them with more adaptive ones. For example, when someone is asked to name a picture of a cat, they accidently call it a dog. Then after being corrected, they continue to call the cat a dog. Perseveration can be treated by behavioural and cognitive training in a structured environment, and possibly by group therapy or medication. Contact your local Brain Injury Association for assistance.
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James refuses to let paraplegia determine what he can and can’t do James sustained paraplegia in 2009 through a motorbike accident which fractured three vertebra. There was severe damage to his spinal cord which left him classified as a T10 paraplegic. James had three
bouts of surgery before being allowed to start resuming normal activities. He has not only returned to work, married his girlfriend and learned to drive again, but has set seemingly impossible goals then stunned everyone by attaining them. “During rehab I realised how mentally strong I was (stubborn maybe) and that anything that I put my mind to I could achieve” said James. Wheelchair bodybuilding After a year of surgeries and the inability to train in any capacity, James realised he had gained weight. His wife decided to train for a physique competition and he thought the best way to lose the weight and support her was to train and diet with her. “It wouldn’t have been very nice eating chocolate in front of her” said James. “I discovered through my weight loss journey that I enjoyed the mental and physical challenge”. After only nine months, James lost 25kg and decreased his body fat to 9%, achievements that rival those of an elite athlete. As with many aspects of his life, James has had to work out new strategies to conquer the challenges his paraplegia imposes. “If there’s a particular exercise that I want to do I simply find a way to do it,” he said.
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The results speak for themselves. In 2011, James won two first places: • INBA Queensland Titles 1st Seated Disabled • INBA Natural Universe - 1st Seated Disabled. Back to doing it in the dirt Moving from two wheels to the four wheels of a “quad” was a natural choice for James since he could no longer ride a motorbike. Like all areas of his life, James aims to push the limits of what is possible. He is currently looking into either riding to Cape York, or entering the APC Rally. This 14 day 7500 km adventure ride goes through some of the most challenging deserts, forests and mountains Australia has to offer. It is designed to test the abilities, endurance and aptitude of riders which suits James down to the ground. Advocacy issues When James bought the quad he and his father realised he could only get conditional registration and that requires landowners and police permission. There was no legislation to recognise the quad as a mobility aid, and the only vehicle recognised was a motorised scooter suitable for pavement use only and unable to handle Australia’s offroad terrain. Forestry regulators also had no policies allowing the use
James since represented his company at the Aircraft Manufacturers international conference in Holland. James recently bungee-jumped in his wheelchair and was appreciative of the willingness of staff to make the necessary adaptations for him to make the jump. He is finding this positive attitude spreading throughout many sports, allowing people with a disability to achieve as much as an ablebodied person. “Each disability is different, requiring modifications or different devices to allow anyone with a disability to achieve a normal life and be part of the community” said James. “With new technologies emerging, this allows us to achieve more and incorporate adventure into our lives”. No limits to what is possible James is living proof that with the right attitude and supports there are virtually no limits to what is possible. His tips for anyone struggling to put their lives back together after a traumatic accident? “Just do it. Find out what works for you as everyone is different. Don’t let people tell you that you can’t do something cause you can do anything you put your mind to.”
of quads for recreational purposes. James and his father, Andy, found a government policy called “Absolutely Everybody” which promoted equal rights of access for all. They used this to show that all they wanted was equal rights of access, and after much negotiation James was given access to ride his quad in state forests and the public roads between them.
“We have found that if legislation does not fit the circumstances then obtaining permits and permission is tricky” says Andy. “I ask them not to say why we can’t do it but look for something that will allow us to do it.” The next step for James and Andy is asking local MPs to push for a special registration class that doesn’t need landowners and police permission but recognises the quad as a mobility aid. There are plenty of situations where people or organisations have been only too keen to make the necessary accommodations for James to live a normal life. James was an apprentice aircraft engineer before his accident. Due to not being able to access the aircraft, the company changed his role to Reliability Engineer, monitoring the planes’ reliability and effectiveness of maintenance schedules.
After a brain injury, some people recover sufficiently to return to work but may encounter difficulties due to cognitive deficits. The Disability Discrimination Act 1992 specifies that people with a disability have equal opportunity to gain employment and that their disability should only be taken into consideration when it is fair to do so. The Act also states that employers should make reasonable adjustments to accommodate the needs of someone with a disability. An employer cannot discriminate against someone on the basis of disability. If a person is able to carry out the ‘essential activities’ of a job despite their disability, they must be given the same opportunity to do that job as everyone else has. What are the reasonable adjustments an employer must make? This means the employer must examine the physical and organisational barriers which may prevent the employment, limit the performance or curtail the advancement of people with disability. Examples of reasonable adjustment include changes to work practices or job design, modifications to equipment or premises, and training or other assistance. Whenever it is necessary, possible and reasonable, employers should take into account a person’s disability and make appropriate adjustments to the work environment to accommodate people with a disability.
The invisible disability
Acquired brain injury is often called the invisible disability because its long-term problems are usually in the areas of thinking and behaviour, and are not as easy to see and recognise as many physical disabilities. As a consequence, the difficulties people with brain injuries face are easily ignored or misunderstood. Even family members and friends may regard a person with Acquired Brain Injury who exhibits cognitive problems or changed behaviour, as lazy or hard to get along with. There is very little understanding or knowledge in the community about brain injury and the impact it has on individuals and families. Acquired Brain Injury is not to be confused with intellectual disability, as there is not necessarily a decline in overall level of general intellectual functioning. Rather, they are more likely to experience specific cognitive changes that lead to difficulty in areas such as memory, concentration and communication.
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Caring for someone with a brain injury Useful tips following discharge by Headway UK The period immediately following your relative’s brain injury is a frightening and confusing time. The outcome can be very uncertain, and it will probably be the first time you will have had any experience of brain injury. It is important to access information and support as early as possible. If your relative was recently injured then we hope this information will help you to start making sense of the situation. Understanding hospital systems The treatment pathways for different kinds of Acquired Brain Injury vary. In the case of very serious injuries, a person will normally be taken to the local Accident and Emergency department, where they will be assessed and their condition stabilised. They should then be transferred to a neurological centre, if it is considered appropriate and there are beds available. If not, they will be admitted to a general hospital and may be treated in a nonspecialist ward. It is very important after brain injury that your relative rapidly receives the best specialist care possible. If the treatment is provided in a general hospital then the doctors there should consult with neurologists and neurosurgeons at a nearby neurological centre. It is worth 23 / B R I D G E M A G A Z I N E
remembering that, on many occasions, people with minor brain injury may not spend any time in hospital and consequently don’t get referred to appropriate rehabilitation and support services. Coping with the hospital stage After a brain injury, the stay in hospital is often far more distressing for family and friends than it is for the person with the injury, who may be unconscious or have no awareness or memory of this period. Your main concern at this time will be the well-being of your relative, but you should also remember that the best way to help is to look after yourself and you shouldn’t neglect your own well-being. You will probably want definite answers in the early stages, which the medical staff often can’t provide. Rest assured that, if this is the case, you are not being deliberately kept in the dark. If the injury is very severe then stabilising and managing your relative’s condition will be the main priority, and the long-term difficulties will only become apparent at a later stage, such as when rehabilitation starts, or even when they return home. Get in touch with the social workers at the hospital, as they should be a good source of advice and support.
What you can do to help your relative It is normal to feel quite helpless when your relative is in hospital and to feel desperate to be able to do something constructive. There are many factors involved in the treatment of different kinds of brain injuries so we can’t advise on specific activities here, as some things may be beneficial in some instances but harmful in others. Helping your relative can take many forms and the following can all make valuable contributions: • Communicate as much as possible with the medical staff. They will be able to suggest any appropriate ways for you to help. • Organise visiting hours with family and friends, so that you provide adequate support for your relative, without overwhelming them or causing any disruption to their treatment and recovery. • Provide interest and stimulation. Just talking to your relative about everyday things helps, as does providing books, magazines, DVDs, etc. • Help with personal care and grooming under the advice and supervision of nursing staff. • Try to arrange the week’s tasks at the start of the week so you can stay organised and don’t have to keep asking the staff.
Rest, take breaks & make time for yourself • Do not feel that you or members of your family have to spend 24 hours a day sitting at your relative’s bedside. You will cope best if you are able to go home for a while and get as much sleep and rest as possible. • If you are having a lot of trouble sleeping, speak to your GP who will be able to discuss relaxation techniques, therapy, medication, or referral to counselling. • Try to make time for activities that you find enjoyable, such as hobbies and socialising with friends.
What you can do to help yourself This is a time during which you will probably have to do a great deal of reorganisation in your daily life, and it is very important to remember to look after yourself. The following advice is worth keeping in mind: Lean on others • Seek help from professionals, such as hospital staff, social workers and your GP. • Be very clear and assertive in telling people in authority what you want and what you need from them. • Seek the help and support of relatives, friends and neighbours. • Involve all of the family in taking on household tasks. • Ask one particular person in the family to deal with any enquiries from concerned relatives and friends, since this can be particularly stressful. • Be aware of other sources of support at the hospital, such as facilitated support groups, volunteering services, and religious support. • Talk to other families on the ward in similar situations. • Ask to see a hospital social worker.
Make financial arrangements • Talk things through with your bank manager in order to reschedule any debts and budget for your new circumstances. • Organise personal finances and payment of bills. This can be a particular problem if your relative was previously responsible. If possible, arrange for a willing and responsible friend or family member to take on the duty. • Think about things like superannuation or workers compensation and ask a solicitor what you and your loved one may be entitled to. • Check on any insurance policy your relative has, particularly medical insurance. • Talk to your relative’s employer to find out if they have an occupational pension which is initiated following serious injury. • If your relative has been in an accident you may be able to take legal action against the person or organisation responsible. It is important to seek advice from a solicitor with expertise in brain injury claims. Make arrangements with employers • Keep both your own and your relative’s employers informed about the situation, and make sure that arrangements are in place regarding time off and statutory sick pay. • Check whether your employer has a scheme for compassionate leave. Your contract of employment or company handbook should contain details of this. • If your contract has no provision for compassionate leave then your employer has no legal obligation to grant you time off, so it is especially important to be as communicative as possible with your employer in order to help them understand your situation. • Your relative may be entitled to sick pay, or more if allowed in their employment policy. For the employer to consider dismissal, they must have excellent medical grounds to say your relative will not be capable of returning to the job in any capacity. • If your relative is self-employed you may need to check if they are insured for accidents or illness. If not, then you will need to make arrangements to ensure that tax is paid and that any business associates or clients are
informed of the situation. You might want to appoint a willing friend or family member to deal with these matters. Keep records • Try to keep records of events. This often proves to be useful at a later date as it can be very difficult to recall everything accurately if it isn’t written down. • Ask for a copy of any letters the hospital sends to your relative’s GP. These can provide valuable supporting evidence for benefits and compensation claims. • Keep notes of the date and time of the injury, the treatment your relative receives, and the professionals who provide treatment and care. • If possible arrange for a responsible friend or relative to keep these records on your behalf. Look after your physical health • It is important to remember to eat a healthy, balanced diet • Make time for exercise • See your GP with any health concerns of your own. Understand & manage your emotional reactions It is important to remember the following points: • There is no right and wrong way to feel at a time like this and all reactions can be considered completely natural. • Emotional reactions change rapidly at this time, and it can be impossible to predict the stages of your emotional reactions. • Coming to terms with a relative’s injury is a complex and ever-changing process, and you may find yourself feeling emotions that you thought you had left behind. • Don’t expect everything to make sense initially. Speak to other carers and families who have been through a similar situation. Try to make time to speak to other families on the ward and make contact with the Brain Injury Association in your State and/or get involved in a brain injury carers support group. • Try to keep returning to any written materials you have received. It will be difficult to take things in at first, but the information will gradually start to sink in. • Your GP may be able to refer you to local counselling services. This article is reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to email@example.com to discuss any issues raised. Headway - the brain injury association is a charity in the United Kingdom offering support to people affected by brain injury through rehabilitation programmes, carer support, training, social re-integration, information, advocacy, community outreach and respite care. Visit the website for great resources available for free download. 24 / B R I D G E M A G A Z I N E
Going the distance
These tips on avoiding burnout for health professionals are handy for carers too It is ironic that working as a health professional takes place in an environment that can cause high rates of stress and burnout. The multiple demands of an often conflicting and difficult environment can be a source of strain and burden, as well as being a great challenge and source of satisfaction. Sometimes the level of demand in managing difficulties can lead to a work overload causing an unhealthy amount of energy and worry being devoted to work which leads to an unbalanced lifestyle. Complicating factors include shift work and travel/time commitments where follow-up may be required. These can further heighten the potential for excessive workload and over-focus on work demands and responsibilities. An excessive workload increase the risk of burnout, so self-management of work is needed to maintain a balanced lifestyle and ensure your work is rewarding and meaningful. These tips are a starting point for you to avoid burnout and assist you in going the distance. Going the distance in summary Health professionals working in technically and emotionally demanding roles are often at risk of burnout themselves and also may incur long-term frustrations and coping difficulties, which may lower the quality of services they provide. In ‘going the distance’ (e.g. maintaining a long-term professional role in the field of
work-related stress) you should look after yourself both personally and professionally to avoid burnout and keep work fresh and interesting. Review the seven tips discussed above and identify the key skills and strategies needed to enable you to continue to grow, develop and refine your personal and professional coping skills. seven tips to avoid burnout & help you go the distance 1 Maintain highly structured work hours so there is a clear change between work and non-work times even when you have to work long hours or work from home. 2 Set goals for your personal life in the areas of relationships, social (friends, family, hobbies and recreational interests) and lifestyle (i.e., sleep, diet and exercise) and see these as important (or more important) as any professional goals. Devote specific time, energy and commitment to these activities even when you don’t feel like it. 3 Be self-aware and expand your knowledge of stress management and of your own psychological condition to promote your own coping and minimise the impact of negative emotions. 4 Expand your knowledge of healthy thinking, coping and relaxation techniques. Set goals and plan ahead and look for meaning, opportunity and growth in your personal life as well as in your professional life 5 Be more accepting and less demanding of yourself both personally and professionally and be kind and understanding towards yourself as you continue to balance work and life priorities. Learn to accept your mistakes and setbacks and learn from them. 6 Stay flexible with schedules of work and personal activities and allow some variability with each one when necessary. Balance is the key. 7 Seek assistance for yourself if needed. Seeking assistance when necessary is a great way further develop and expand the quality of your life. Remember, you cannot give what you do not have, and role modelling a low stress relaxed lifestyle is not only great for you but also for those around you.
PSYCARE: CLINICAL & CORPORATE PSYCHOLOGY Psycare is a dynamic team of psychologists based in Brisbane, Queensland, providing corporate and clinical consulting services. Corporate services include leadership assessment, coaching and development; organisational health audits; team development; wellness programs; grievance investigations; policy review, education and training; & early intervention, employee assistance, mediation and debriefing. PsyCare Clinical & Community services include assessment, treatment, rehabilitation and support programs for adults, families, couples, teenagers and children across a range of common psychological problems. PsyCare works closely with private and GP referrals; worker’s compensation and CTP insurers; & disability, child and family organisations. • Tel: 07 3839 4400 • Fax: 07 3839 4455 • Email: firstname.lastname@example.org • Website: www.psycare.com.au 25 / B R I D G E M A G A Z I N E
I have a brain injury!
Why some people won’t believe you Acquired Brain Injury (ABI) if often called the invisible disability because a person may outwardly appear to be unaffected –particularly if the cause was a brain tumour, near drowning, mild stroke or drugs. Even when the injury is caused by trauma such as a motor vehicle accident, the scars may heal so well that the person appears to be fully recovered. Unfortunately even a so-called ‘mild’ brain injury can leave a person facing cognitive deficits in memory, concentration, motivation, fatigue, stress, depression and reduced selfawareness. Survivors of a brain injury often find that family, employers and friends have trouble accepting there can still be problems when there is no easily observed physical evidence. Family members often have difficulty understanding the invisible nature of Acquired Brain Injury. With effort, the survivor of a mild to moderate brain injury can often hide or compensate for their cognitive deficits so that most people will not initially detect any problems. However, families get to see beyond the ‘public face’ due to the amount of time they spend together. After a brain injury, the family is frequently confronted with a ‘new’ personality — a family member who may appear: • negative • unmotivated • unable to carry tasks through to completion • constantly forgetting things • unable to take others’ needs into account • prone to depression or angry outbursts. Before a brain injury, we usually have some degree of control over these areas and how we chose to act and speak. But after an ABI it’s common to lose these abilities, and only regain some control after extensive rehabilitation.
How to convince others How does a survivor convince sceptical family or friends that they do have a brain injury? Trying to discuss the issue is often difficult. Family members may become resentful if they have been coping with some of the more challenging consequences of a brain injury, such as anger or self-centredness. Discussions can break down into recriminations, and the brain injury can be seen as a “poor excuse” for inappropriate behaviour. Families often develop an understanding of ABI through simply reading about it. Previously their ideas may have been inaccurately based on what they had seen in movies (e.g. a person is knocked briefly unconscious, forgets who they are, their memory is restored by another bump to the head, then they are fine again). There is a wealth of medical research and information showing that even in cases where people don’t lose consciousness, they may face lifelong difficulties with short-term memory, emotional instability and a wide range of other effects, a far cry from the instant recovery portrayed by Hollywood (Synapse’s “Get The Facts” booklet is available to ensure everyone can easily access the real facts on ABI). Ongoing physical issues Unfortunately, a brain injury is more than just life-long cognitive effects such as susceptibility to stress, inability to work, memory problems and extreme fatigue. Traumatic brain injury can often leave lasting effects in terms of musculoskeletal problems, migraines, auditory and visual disabilities, and neuroendocrine disorders. Insurance companies and generic rehabilitation services are often unaware of the frequently ongoing nature of deficits from traumatic brain injury and that a ‘return to normal health’ does not occur in the majority of
cases. In some cases survivors need to take legal action to obtain the rehabilitation and support that their insurance guarantees. There is a public perception that legal compensation payouts are often very large; however such multi-million dollar awards take into account that the person will need cognitive and physical therapy or support for the rest of their lives. What about the ultimate sceptics? Some people may refuse to believe a brain injury exists unless there is firm medical proof. Usually a moderate to severe brain injury leaves scarring that will clearly show on MRI or CAT scans. The brain does have a limited ability to heal itself; and in milder cases, a scan conducted years or even months after the injury may no longer show evidence, although the cognitive deficits remain. There is also diffuse brain injury, where the damage occurs at a microscopic level throughout the brain, and will not show on scans despite the huge impact it can have. In these latter cases a neuropsychological assessment can be used to identify a brain injury, its effects, and to develop the strategies needed for rehabilitation. Testing includes a variety of different methods for evaluating issues such as attention span, memory, language, new learning, spatial perception, problem-solving, social judgment, motor abilities and sensory awareness. These tests can be quite expensive. Universities offering programmes in neuropsychology often provide evaluations at a lower cost or on a sliding scale as part of their student training. It is no wonder that brain injury survivors get discouraged when others won’t accept that they have this disability, and the survivors have to face criticism instead of receiving support. 26 / B R I D G E M A G A Z I N E
International face of brain injury While no one in their right mind would ever wish a brain injury for anyone, it is encouraging that there is a growing recognition by the media of brain injuries acquired by well known people. It can only be hoped that will help lead to more funding and support services for those who aren’t as famous. Molly Meldrum (Australia) On 15 December 2011, Meldrum was taken to the Alfred Hospital in a critical condition after being found unconscious in the backyard of his home in Richmond. He is believed to have fallen off a ladder from a height of around three metres. He was placed under intensive care in a sedated state and had surgery for his head injuries. By 27 December, further surgery to his chest injuries had occurred and his sedation levels were reduced. His brother said Meldrum had “spoken some words but they have no context”. On 8 January 2012, his brother Brian said Meldrum was breathing on his own and having conversations, but added his recovery would be slow. On 19 January 2012, Meldrum was taken out of hospital and moved into a rehabilitation centre. In April 2012, he gave his first public interview since the accident. A few months after the accident, Meldrum interviewed British pop singer Elton John and American pop singer Katy Perry. Mohammed Ali (USA) Born Cassius Marcellus Clay, Mohammed Ali is a former professional boxer, philanthropist
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and social activist. He began showing symptoms of Parkinson’s syndrome shortly after his retirement in 1981. An official diagnosis was made three years later when his symptoms included tremors, slurred speech and slow body movements. It is widely believed that the repeated blows to the head from Ali’s boxing career were a major factor in the underlying causes of his Parkinson’s syndrome. Gabrielle Giffords (USA) US Senator Giffords was shot in the head in January 2011 outside a grocery store in Arizona. The bullet had passed through Giffords’ head without crossing the midline of the brain, where the most critical injuries typically result. She was placed in an induced coma to allow her brain to rest. Within weeks, she began simple physical therapy. In late April, her doctors reported that her physical, cognitive, and language production abilities had improved significantly, placing her in the top five percent of patients recovering from similar injuries. She was walking under supervision with perfect control of her left arm and leg, and able to write with her left hand. She was able to read and understand, and spoke in short phrases. With longer efforts, she was able to produce more complex sentences. By June, Giffords returned home and her comprehension appeared to be “close to normal, if not normal,” but she was not yet using complete sentences. She made her first public appearance in August 2011 and was met with a
Gabrielle Giffords (USA)
Richard Hammond (UK)
standing ovation and accolades from her fellow members of Congress. Giffords has since resigned from Congress to focus on her recovery. She continues to struggle with language and has lost fifty percent of her vision in both eyes. Richard Hammond (UK) Richard Hammond is a well known presenter on the TV program Top Gear. In September 2006, he was driving a jet-powered car which had a front tyre blow out at 463 km/h. The car veered on to grass then began tumbling. During the roll, Hammond’s helmet had embedded itself into the ground, flipping the visor up and forcing soil into his mouth and left eye. In February 2008 Hammond gave an interview to The Sunday Times newspaper, reporting he has loss of memory, depression, and difficulties with emotional experiences. Hammond says he could not deal with being prey to every single emotion that swept over him. He has damaged the part of his brain which controls spatial awareness and says as a result now finds it difficult to park his car. He now believes that returning to work only four months after the crash was far too early as he would often feel argumentative, angry, and thinking he couldn’t get the job done. Hammond states he feels a lot more fixed than he was, but that it has been a long journey that will continue into the future. This article is under the Creative Commons Attribution-ShareAlike License 3.0
Molly Meldrum (Australia)
Chronic Traumatic Encephalopathy Chronic Traumatic Encephalopathy (CTE) is a progressive degenerative disease of the brain often found in athletes (e.g. boxers, football players) with a history of repetitive brain trauma. It includes symptomatic concussions as well as asymptomatic subconcussive hits to the head (e.g. injuries without symptoms). It was first noticed in boxers before the 1930s and casually referred to as a “punch-drunk” syndrome but was thought to only apply to boxing and not other sports. CTE has been most commonly found in professional athletes participating in American football, ice hockey, professional wrestling and other contact sports who have experienced head trauma. It has also been found in soldiers exposed to a blast or a concussive injury, in both cases resulting in characteristic degeneration of brain tissue and the accumulation of tau protein. Individuals with CTE may show symptoms of dementia, such as memory loss, aggression, confusion and depression, which may appear within months of the trauma or many decades later.
Signs and symptoms These include disorientation, confusion, vertigo, headaches, poor judgement, slowed muscular movements, staggered gait, impeded speech, tremors and deafness. There are often three stages to the disease. The first stage is characterised by its disturbances and psychotic symptoms. The second stage may include erratic behavior, memory loss, and the initial symptoms of Parkinson’s disease, such as difficulty with balance and gait. The final stage is dementia as well as symptoms related to Parkinson’s disease.
Prevention No agreement has been reached on the degree of head trauma needed for CTE to develop. Recently, investigators demonstrated that immobilizing the head during a blast exposure prevented the learning and memory deficits associated with CTE that occurred when the head was not immobilized. This research, represents the first case series of postmortem brains from U.S. military personnel who were exposed to a blast and/or a concussive injury. This article is under the Creative Commons Attribution-Share-Alike License 3.0 and is derived from pages on Wikipedia.
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Brain injury and mental illness
Can a brain injury lead to mental illness? Mental health issues can occur in anyone, and are common in our society. Most don’t have a single cause, but result from a complex combination of events and conditions, including the person’s biological and inherited makeup, their psychological make-up and skills, and their family, social and community environment. Risk factors such as stress increase the likelihood that a person will develop a mental health issue. On the other hand, protective factors that help people to cope with adversity include an easy temperament, a strong and supportive environment, and a sense of belonging.
Adolescence- particularly later adolescence- is when mental health issues are most common. Some of these issues start in childhood, some during adolescence. Some young people with a brain injury will not experience a mental health issue, but many will. Each young person’s level of risk and protective factors will be different, but some of the effects of a brain injury can increase the risk of mental health issues. For example, a brain injury can erode any one person’s confidence and self esteem, and behavioural problems can put teenagers and young adults at high risk of becoming socially isolated. In short, brain injury may both increase stress (more stressors such as lack of income due to injury) and decrease a person’s ability to cope with stress. The most common mental health issue in young people with brain injury is depression –
What you need to know about managing medications safely As people get older, they often end up taking a range of medications for various conditions. Medications can have sideeffects that differ from person to person or with age, because the body processes them differently. Depression and confusion are common side-effects. Drugs can also interact with each other. The interactions can be difficult to predict, and may cause unexpected side-effects: one or other drug may become less effective, for example. The more medications a person takes, the more likely such interactions are. Reducing stress and agitation can also help to reduce the number of medications a person needs. Encourage the person you are caring for to have a social life, to get out and about, to be involved in activities that hold their interest, and to stay as physically active as possible.
often as a response to the adjustments necessary after an injury. Young people with brain injury may also experience severe anxiety, sometimes diagnosed as ‘post-traumatic stress disorder’ or other issues related to the brain injury itself.
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Medication don’ts • Don’t stop using a prescribed medicine unless the doctor tells you to, as some medicines are not effective unless they are used all the time and for a long period • Don’t use other people’s medicines • Don’t use medicines that are out of date as they may no longer be effective • Don’t keep old or unused medicines – your pharmacist can dispose of them for you • Don’t change the dose or the time the medicine is taken without the doctor’s advice. Questions you should ask Do ask questions of your doctor, pharmacist or nurse. If you don’t understand something,
ask for it to be explained in simpler terms. If you need an interpreter, ask for one. It is important to understand the following points about any medication. Using medicines safely at home Use a “dosette” box. These plastic containers come in different shapes and sizes and have compartments labelled by days of the week and meal times. A dosette enables you to organise the week’s medications, and prevents uncertainty about whether or not a medicine has been taken. Pharmacists carry them, and can organise to make one up for you each week at a small fee. If you are unsure about organising tablets, your district nurse or pharmacist may be able to help. Follow the directions: Follow directions given by the doctor, pharmacist or those on the bottle. Directions should include how much of the medicine to take (e.g. 2 tablets), how often to take it (e.g. once a day), how to take it (e.g. by mouth) and when to take it (e.g. with meals). Take medicines at the correct time. Some medicines work best on an empty stomach, others should be taken with food. The doctor or pharmacist can advise. Obey warnings on the label. For example, it is dangerous to drink alcohol or operate machinery while taking many medicines. Take note of side-effects. Make a note of any side-effects that occur, such as drowsiness, forgetfulness, confusion or nausea, and discuss these with your family member and/or your doctor.
medications checklist What is the name of the medicine and what is it for? Are there any possible side effects? Will they fade with time or continue as long as the person is taking the drug? What should you do if there are side effects? How long should the person be taking the medicine? What should you do if a dose is missed? Will the medicines interfere with others being taken? Take a list of all the person’s medicines or all the medicine containers with you. Will the medicine affect other medical problems the person has? Is there anything the person should avoid doing or taking while on this medication? (e.g. alcohol) Is there a lower priced brand? Often the same medicine is available more cheaply packaged under a different name by another company.
Sexual changes Keep a record. Make sure you keep a record of what is being taken. Sometimes new drugs are prescribed without the doctor being aware of what other medications the person is on. Taking a newly prescribed drug on top of other tablets can cause serious side effects. Use a “Medi-list” form, available from your pharmacist, to keep record. It allows you to list all the drugs, when to take them and the dosages. The pharmacist can help you fill it out and keep it up to date. Take it whenever you go to see any health professional (doctor, pharmacist, specialist, dentist etc). Inform your doctor. Make sure your doctor knows all the medications, preparations and supplements being taken, and whether these are prescribed by a doctor, bought over the counter, or provided by another practitioner. Label bottles. Make sure bottles are labelled properly. A bottle labelled “as before” or “take as directed” can be dangerous for a person who does not remember the previous instructions. Keep medicines away from children. Keep medicines in a child-proof cabinet. Never store medications in a container that could be mistaken for something else – use the correctly labelled and dated container. Likewise, don’t use the empty medicine bottles to store other things. Storage: Read the label to find out how the medicine should be stored. Heat, in particular, can affect medicines. Lack of response: Go back to the doctor if the medicine does not seem to be working.
A brain injury can have a number of consequences for an individual’s sexual functioning, including loss of sexual drive and/or erections, inability to orgasm, premature ejaculation, discomfort during sex, increased desire for sex or reduced sexual responsiveness or desire for intimacy. Such changes may be a direct result of damage occurring to particular brain structures underlying sexual functioning. Other biological causes of sexual dysfunction may include damage to genital organs, muscles and bones, spinal cord and peripheral nerve damage, medical conditions, hormonal disturbance and side effects of medication and drugs.
to a general practitioner, psychologists and psychiatrists may be involved in the assessment and treatment of sexual problems.
Changes in sexual functioning may also occur more indirectly due to a variety of physical and psychosocial changes in areas such as motivation, depression, stress, personality changes, perceptual disorders and memory problems.
Partners and family members can help by seeking information on how to support the person, learning different techniques and compensatory strategies, altering expectations and making changes to lifestyle and routines that improve quality time together.
Seeking professional advice can be an embarrassing and sensitive issue for many people, as sex is usually a very personal and private aspect of life. People are often more likely to discuss sexual problems with their general practitioner during a visit for other health reasons. In addition
Professionals can help individuals cope with a variety of physical and psychosocial changes. Following assessment, specific treatment of sexual problems may involve education, learning new skills and behavioural techniques, physical rehabilitation, aids and medical treatment.
Cost of medicines Medicines listed under the Pharmaceutical Benefits Scheme are subsidised by the Commonwealth Government. If the person you care for has one of a number of concession entitlement cards, they pay a reduced price for each medication. Ask your pharmacist if they are eligible. 30 / B R I D G E M A G A Z I N E