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VOL-6

In this issue:

NEUROCOGNITIVE DISORDERS

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Emotional lability BRIDGE VOLUME 6 - March 2012 ISSN 1448-9856 General Editor: Project Manager: Contributing editors:

Barry Morris Glen Farlow Clare Humphries Anna Petrou

Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: info@synapse.org.au W: www.synapse.org.au Bridge is produced by Synapse (formerly Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.

A family’s love of language & culture

Overcoming brain injury

When our feelings run out of control

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VISUAL DIFFICULTIES: For those with visual problems, go to www.synapse.org.au and view the free online version which can be expanded on screen. DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. 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.

Zolpidem (Stilnox)

Miracle cure or just hype?

Supported by financial assistance from

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INDEX 03 05 07 09 11 13 15 17 19 20 21 22 23 25 27 29 30 1 / BRIDGE MAGAZINE

Brain injury vs neurocognitive disorders Understanding emotional lability Factors affecting medical conditions Managing fatigue Loss of taste & smell Road to recovery Eating, drinking, & grooming equipment Overcoming a brain injury Stroke Parkinson’s disease Tracking progress Supporting recovery Visual disorders Zolpidem (Stilnox) Assessment Planning Service Alzheimer’s disease Huntington’s disease

Changes in definitions on the way Handling the ups and downs of emotions Beware of poor sleep, diet & health Symptoms, triggers & handy strategies A common issue after a brain injury Inspiring personal story on recovery Cool gadgets from LifeTec A family’s love of language & culture A common type of brain injury On the rise for the elderly especially Personal story by Paul Gianni Mental Health Community Service Plan Brain injury affects eyesight in many ways Is this drug a miracle cure of just hype? A service by Synapse A type of brain injury affecting the elderly A neurodegenerative genetic disorder


bridging THE GAP Jennifer Cullen CEO of Synapse

Neurocognitive disorders Readers of Bridge will know the term “invisible disability” when referring to Acquired Brain Injury (ABI), as well as the ongoing lack of awareness, education, support, and difficulties in receiving services even if they are available. The need is undeniable – over 1.6 million people in Australia have a brain injury*, and that doesn’t include over half of the homeless and criminal justice populations, and a large amount of misdiagnosed or undiagnosed people. So why the lack of funding and resources? The fact of the matter is that ABI (including TBI) does not have an accurate, evidence-based definition in either the State or Commonwealth health systems. Perhaps the more pertinent questions is how do we provide services around a disability group that isn’t properly identified in the Australian health system? Synapse has been asking this question for several years, and while we don’t have all the answers, we are working towards being part of the solution. The proposed term

“neurocognitive disorders” (see page three) may go a long way to addressing groups not wanting to be dumped in the boiling pot (e.g. Alzheimer’s patients not wanting to be labelled, stroke patients not wanting to be classified as a mental health issue). We need to focus on the needs and best outcomes for our clients, not the value or label that each organisation is ‘meant’ to serve. Part of the solution already exists . . . in the Disability Service Standards. As a result, Synapse works to a model of support based on Positive Behaviour Support, and PersonCentred Planning, as specified by Disability Services. Providing services based on each person’s behaviour, enables us to focus on the needs of the individual, rather than the label of disability. Similarly, why spend so much money on each individual disability separately, when more appropriate models can be developed to meet the care needs across multiple disability groups? So what about the National Disability

Insurance Scheme (NDIS) and the National Injury Insurance Scheme (NIIS); aren’t these initiatives going to fix the issue? We believe these are steps in the right direction, but at the moment they won’t solve the problem. We all need to contribute to providing information on how the schemes should be developed and implemented across Australia. The current model of NDIS doesn’t have any measures for behaviour, the vital diagnostic tool in many different types of disability groups, not just ABI. A lot of work still needs to be done in development of accurate measurement tools for the NDIS and NIIS; how will the schemes be rolled out in rural and remote regions, and what needs to be considered in relation to those from a CALD background and Aboriginal and Torres Strait Islander groups? We all have the capacity to influence the development, so Synapse strongly recommends that you become a voice for the future change of how disability services are implemented in the future. * World Health Organisation, 2007

Synapse is funded by Home AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS and Community Care, a joint QLD Synapse Inc. Tel: 07 3137 7400 Email: info@synapse.org.au Web: www.synapse.org.au Synapse is Commonwealth funded by Homeand andState/ AUSTRALIAN QLD Headway GoldNETWORK Coast Tel: 07 5574 4311 Email: admin@headwaygoldcoast.org Web: www.headwaygoldcoast.org OF BRAIN INJURY ASSOCIATIONS program providing CommunityTerritory Care, a joint CommonAUS Brain Injury Australia Tel: 1 800 BRAIN1 Email: admin@braininjuryaustralia.org.au Web:www.braininjury.org.au www.braininjuryaustralia.org.au funding and assistance for QLD Brain Injury Association of Qld Tel: 07 3367 1049 Email: biaq@braininjury.org.au Web: wealth and State/Territory program NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: mail@biansw.org.au Web: www.biansw.org.au Australians in need. providing funding and assistance AUS Brain Injury Australia Tel: 02 9591 1094 Email: admin@braininjuryaustralia.org.au Web: www.braininjuryaustralia.org.au VIC BrainLink Services Tel: 03 9845 2950 Email: admin@brainlink.org.au Web: www.brainlink.org.au for Australians in need. NSWTAS BrainBrain InjuryInjury Association of NSW 02 9868 5261 Email: mail@biansw.org.au Web: Association of Tasmania Tel:Tel: 03 6278 7299 Email: enquiries@biat.org.au Web:www.biansw.org.au www.biat.org.au VIC WA BrainLink Services Tel: 03 9845 2950 Email: admin@brainlink.org.au Web: Headwest Tel: 08 9330 6370 Email: admin@headwest.asn.au Web:www.brainlink.org.au www.headwest.asn.au NetworkofofTasmania South Australia 08 8217 7600 Email: info@binsa.org Web:www.biat.org.au www.binsa.org TASSABrainBrain InjuryInjury Association Tel:Tel: 03 6278 7299 Email: enquiries@biat.org.au Web: NT Somerville Community Services Tel: 08 8920 4100 Email: scs@somerville.org.au Web: www.somerville.org.au SA Brain Injury Network of South Australia Tel: 08 8217 7600 Email: info@binsa.org Web: www.binsa.org NT

Somerville Community Services

Tel: 08 8920 4100 Email: scs@somerville.org.au

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Web: www.somerville.org.au

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Brain Injury vs neurocognitive disorders?

An injury to our brain is called many things around the world, making it even more difficult to raise awareness and much needed funding A quick look at brain injury information on the Internet quickly reveals a lot of overlapping terms such as brain damage, head injury and Acquired Brain Injury. To date, Acquired Brain Injury has proved to be a suitable definition for anyone who has cognitive impairments resulting from some kind of injury to the brain occurring after birth. But the Diagnostic and Statistical Manual of Mental Disorders (DSM) will be classifying brain injuries in the category of neurocognitive disorders from 2013. So what’s a neurocognitive disorder? “Neurocognitive” describes all the cognitive functions linked to working of particular areas, pathways and networks in the brain. So a neurocognitive disorder refers to problems in areas like attention, memory, language, problemsolving, emotional control and self-awareness. These effects are from physical changes in the brain, usually resulting from neurological illness, mental illness, drug use, or brain injury. Why use “neurocognitive disorder”? Why is this important? Does renaming or reclassifying really make a difference? Using the term neurocognitive disorder means we are looking at the similar effects on the brain caused by a wide array of causes. And of course it is the effects that are important; 3 / BRIDGE MAGAZINE

all our treatment, rehabilitation and supports are based on reducing the effects of injury to the brain, and maximising the potential for a person to recover. This emphasis on effects, not causes, has many benefits. It means a more consistent approach in treatment and support is possible. It also means that disorders that are less common and attract less funding should have higher recognition. For example, a diagnosis of Acquired Brain Injury means cognitive symptoms along with memory and/or physical impairments. However, people who have cognitive symptoms but no memory or physical impairments will have trouble accessing support (e.g. HIV-related cognitive decline). Raising awareness of specific diseases and disorders is crucial to obtaining scarce funding, so uniting well known and lesser known disorders

under the one banner should help to raise awareness. And it’s much easier for the public to learn the term “neurocognitive disability” than a dozen different terms. One of the main reasons the DSM updates their terminology is to make diagnosis easier, hopefully diagnosis of neurocognitive disorders will take place earlier, faster and more accurately than in the past. Early intervention is usually critical for cognitive impairments, and should reduce the strain on services that are currently more reactive than proactive. So here at Synapse we will gradually move to using the term neurocognitive disorder interchangeably with Acquired Brain Injury. Like to know more? Visit www.dsm5.org/proposedrevision/ pagerocognitivedisorders.aspx

WHAT IS THIS “DSM” YOU SPEAK OF? The DSM is the Diagnostic and Statistical Manual of Mental Disorders (DSM). It is published by the American Psychiatric Association and provides a common language and standard criteria for the classification of many disorders. The current fourth edition will be updated in May 2013 with the fifth edition. One of the revisions is the placing of brain injury under the term “neurocognitive disorders”. So why is the DSM so important? It is used by clinicians, researchers, psychiatric drug regulation agencies, health insurance companies, pharmaceutical companies, and policy makers in most countries around the world.


CURRENT TERMS USED IN AUSTRALIA

PROPOSED TERMS FOR 2013 & ON

ACQUIRED BRAIN INJURY (ABI)

An Acquired Brain Injury is caused by events after birth, rather than as part of a genetic or congenital disorder. It is broken into two sub groups.

TRAUMATIC BRAIN INJURY A traumatic brain injury occurs when an external force injures the brain. Brain trauma can be caused by a direct impact or by acceleration alone. Typical causes include motor vehicle accidents, assault, falls and neurosurgery.

NON-TRAUMATIC BRAIN INJURY These impairments result from either or non-traumatic injury derived from either an internal or external source. Typical causes include stroke, brain tumours, infection, poisoning, lack of oxygen and/or blood to the brain and substance abuse.

NEUROCOGNITIVE DISORDERS*

The fifth edition of the DSM will classify the following as neurocognitive disorders: • Neurocognitive Disorder Associated with Alzheimer’s Disease • Neurocognitive Disorder Associated with Vascular Disease • Neurocognitive Disorder Associated with Fronto-Temporal Lobar Degeneration • Neurocognitive Disorder Associated with Traumatic Brain Injury • Neurocognitive Disorder Associated with Lewy Body Disease • Neurocognitive Disorder Associated with Parkinson’s Disease • Neurocognitive Disorder Associated with HIV Infection • Neurocognitive Disorder Associated with Substance Use • Neurocognitive Disorder Associated with Huntington’s Disease • Neurocognitive Disorder Associated with Prion Disease • Other Specified Neurocognitive Disorder. *NOTE: the DSM splits all of these into “major” and “minor” disorders as well. We’ve omitted this for ease of reading.

A NEUROPSYCHOLOGIST’S TAKE ON NEUROCOGNITIVE DISORDERS Why is the term neurocognitive disorders emerging as the preferred term to use in place of Acquired Brain Injury? The term “neurocognitive disorders” has emerged as the preferred term to replace a category known as “Delirium, Dementia, Amnestic, and other Geriatric Cognitive Disorders” in the DSM 5 because this new term provides a clear link between a decline in cognitive ability (“cognitive”) and a “neuro” origin – e.g. known or assumed brain damage. Where the cause of this condition is known (e.g. Traumatic Brain Injury; Alzheimer’s disease) it can be classified as a subtype. This change in terminology will improve the classification of a range of acquired conditions where the main feature is a decline in cognitive ability from a previous level of functioning due to changes in brain structure or functioning. At present, this means that disorders where cognitive changes occur but are not the primary feature, such as schizophrenia and depression, will not be included. As with the DSM IV, neurodevelopmental disorders are also excluded, as the focus in this category is on acquired disorders. As a Clinical Neuropsychologist how will this change of terminology (&/or classification) impact on you as a practitioner? As a clinical neuropsychologist, the change in terminology will help improve the classification and provide greater clarity regarding the diagnosis of different brain-related conditions. The greater emphasis on objective neuropsychological assessment, rather than individual judgement, will also help to improve diagnostic accuracy. However, this may also increase the workloads of neuropsychologists, although as access to such a labour intensive and limited resource can be difficult it seems likely that a balance will need to be achieved between the need for neuropsychological assessments and practicality of accessing such a service.

In particular, this new classification system highlights the need for objective assessment and identification of milder levels of cognitive impairment that can be present in conditions such as traumatic brain injury or the early stages of Alzheimer’s disease. This is important as early intervention is crucial in such conditions. What implications does this have on Allied Health workers and other health workers overall? Clearer identification and classification of conditions should enable better communication and understanding within allied health professionals and medical professionals. Can we make comments about the proposed changes? Yes. There have been two opportunities to provide feedback and comments on the DSM 5, and there will be a third and final chance in Spring 2012. Visit www.dsm5.org this September to see when you can participate in this final call for feedback. ABOUT THE AUTHOR: Dr Sarah Russell works as a clinical neuropsychologist for Queensland Health and in private practice in Cairns. At present, she is also a project officer on a pilot study looking at the prevalence of dementia in Torres Strait Islander communities.

Will this change of terminology (and/or classification) impact on families impacted by ABI? This change in terminology to a more neutral term will hopefully help to reduce the stigma around previously used terms such as “dementia”. Improvements in classification will also help people impacted by ABI by providing clearer diagnoses and receiving more focussed treatments and interventions. 4 / BRIDGE MAGAZINE


Understanding emotional lability Emotional lability refers to rapid, often exaggerated changes in mood, where strong emotions or feelings (uncontrollable laughing or crying, or heightened irritability or temper) occur. These very strong emotions are sometimes expressed in a way that is not related to the person’s emotional state. What causes emotional lability? Emotional lability occurs because of damage to parts of the brain that control: • awareness of emotions (ours and others) • ability to control how emotions are expressed, so ability to inhibit or stop emotions emerging. When a person is emotionally labile emotions can be out of proportion to the situation or environment the person is in. For example, a person may cry, even when they are not unhappy – they may cry just in response to strong emotions or feelings, or it may happen “out of the blue” without warning. A person may have little control over the expression of these strong emotions, and they may not be connected to any specific event or person. Following brain injury an individual may also lose emotional awareness and sensitivity to their own and other’s emotions, and therefore their 5 / BRIDGE MAGAZINE

capacity to control their emotional behaviour may also be reduced. They may overreact to people or events around them – conversations about particular topics, sad or funny movies or stories. Weaker emotional control and lower frustration tolerance, particularly with fatigue and stress can also result in more extreme changes in emotional responses. The person may express their emotions in situations where previously they would have been able to been restrained or in control (in quiet situations, in church, listening to a concert). These behaviours can be confusing, embarrassing, and difficult to understand for the person with brain injury and for others. Emotional responses after abi Emotional reactions may be appropriate in the situation, but the behaviour or expression may be stronger, louder or last longer than would be usual for that person. For example, a person may be genuinely happy, but once the laughter has started they may be unable to stop or regulate the behaviour, laughing too loud, too much, or for too long. After brain injury an individual may also show extreme but genuine emotional responses,

including sadness and grief, despair, frustration and irritability, anger, anxiety and depression, and even joy, happiness, and pleasure. These may be appropriate and normal emotional responses. Coping with Emotional Lability Become aware of triggers Be aware of triggers for emotional lability and try to avoid these when you can. Triggers can include: • excessive fatigue or tiredness • stress, worry or anxiety • high stimulation (too demanding, too noisy, too many people) and too much pressure • strong emotions or demands from others • very sad or funny situation (such as jokes, movies, certain stories or books) • discussing certain topics (e.g. driving, loss of job, relationships, death of a family member) • speaking on the telephone or in front of a group or where a person feels under pressure. Have a break Have a short break away from the situation so the person can regain control of emotions, and to give the opportunity for emotions to settle. Sometimes a break of a few minutes or a longer period is enough to regain control


Acquired Brain Injury can change parts of the brain that regulate or control emotional behaviour and feelings of emotions — taking a short walk, doing a different activity all can help to cope with these strong emotions. Ignore the behaviour Try to ignore the emotional lability as much as possible. Try to get others to ignore it too and continue on with the conversation or task. Focussing on the lability, or giving the person too much attention when it is happening, can reinforce the problem. It is important that other people don’t laugh too, as this will also reinforce and increase the behaviour. Change the topic or task Changing the topic or activity (redirection and distraction) can reduce stimulation or stress (particularly if the topic was a trigger). Try to distract or divert the person’s attention by engaging them in a different activity or task. Provide information and education Uncontrolled crying or laughing can be upsetting, frightening or confusing for other people if they don’t understand, so: • Provide simple explanations or information to other people about the lability e.g. “I cry a lot since I had my stroke. . . don’t worry about it” or “Sometimes when I am nervous I get the giggles”.

• Tell people what they should do e.g. “Just ignore me and it will stop”. Plan ahead When there is severe emotional lability, oneto- one, brief and fun activities in a quiet environment will be better. Try to avoid putting the person in stressful situations or environments e.g. noisy, busy, high levels of activity or that are too demanding. Plan activities that are within the person’s ability, and plan more demanding activities or appointments after rests, or when the person has the most energy. Plan for rests between activities. Use cognitive techniques Some simple cognitive strategies can also assist in managing emotional lability: • Relaxation and breathing exercises to reduce tension and stress • Use distractions e.g. thinking of something else, imagining a peaceful image or picture, counting • Do an activity (going for a walk) • Discuss cognitive and behavioural strategies (e.g. ‘thought stopping’) with a psychologist. Counselling and support Sometimes a person has had many losses and

changes to cope with after the brain injury — loss of work, ability to drive, independence, changes in relationships or finances, and lower quality of life. These changes can happen suddenly with little chance to prepare for them. These feelings of sadness, grief, anger, frustration, disappointment, jealousy, or depression after an injury are common and may be very difficult to cope with. If there are other emotional adjustment and coping issues, referral to a counsellor such as a psychologist, social worker or psychiatrist may be helpful. Families (parents, siblings, children), friends or carers may also benefit from support and care to help them understand and to cope with these changes. This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with ABI and their families. Their 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. Ring ABIOS on 07 3406 2311 or email abios@health.qld.gov.au

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Lifestyle factors impacting upon medical conditions Psycare explains how poor sleep, diet and health can badly affect recovery Medical conditions, illnesses and injuries can place added strain on our already at times stressful and busy lives. When we have a medical condition, it usually places limitations on our capabilities and causes disruptions to our lifestyle. These limitations and disruptions can range from simple restrictions and changes to our normal routine through to major changes to our basic living pattern and lifestyle, including areas of diet, work, family, recreation and leisure. In managing medical conditions there are several factors related to our lifestyle that can impede our recovery or cause an increase in symptoms. These factors include worry and 7 / BRIDGE MAGAZINE

anxiety, stress and tension, diet and exercise, sleep, and social support. Negative Thinking - Worrying The problem of worrying Worrying or negative repetitive thinking about possible adverse situations is one of the most destructive and harmful ways of thinking. People who worry a lot tend to experience high levels of anxiety and tension that adversely affect their physical health. This can add further complications when combined with a medical condition. Reducing worry Trying to stop worrying about things can be a seemingly impossible task. Your psychologist is

highly skilled in this area, having been trained extensively in the management of anxiety and worry. Some initial strategies to get you started are outlined below: • When you find yourself worrying about things, don’t try to stop yourself initially but rather systematically write down the likely consequences or concerns on a piece of paper. Make sure that in doing this you not only write down the possible negative outcomes but also the positive outcomes, no matter how likely or unlikely. Next, look at each scenario and think about any possible good points, and remind yourself that though you may not like it you can and will be able to cope.


• If you are lacking any information about issues (e.g. prognosis or likely outcomes and timeframes of medical conditions) then pursue further information and education through appropriate sources (e.g. medical or clinical specialists). • Try to assess realistically your worries and develop other areas to think about. Find a good friend to talk to (or better still, see your psychologist) to pursue this process. • Increase the amount of activity and variety in each day to provide other things to focus on, such as reading, walking, watching a movie or any other activity that does not adversely impact upon your medical condition. Stress and Tension Negative effects of stress and tension Stress and tension refer to physical arousal in the form of muscle tension and contraction. Stressful muscle tension can be experienced in a variety of areas including the eyes, jaw, neck, shoulders, lower back and abdominal area. Prolonged muscle tension can lead to aches and pains, ranging from mild headaches or stiff back to chronic migraines and muscular spasms and injury. Reduction of physical tension & stress Reducing the physical sign of stress through recognising and relaxing muscles in the body is not as easy as it sounds. First, you have to learn to recognise when you are stressed and which muscle groups are the most tense. Then you need to develop skills in systematically relaxing all your muscles, particularly those that are most tense. This area takes a lot of practice and skill to master, and your psychologist can provide expert training in relaxation and stress reduction. The following information provides some starting points to assist you in reducing stress and physical tension: • Learn to recognise the signs of physical tension in your body. This is done by stopping and carefully thinking about how all the different muscles in your body are feeling at regular intervals every day. By doing this you will identify the muscle groups that hold the most tension when you are feeling stressed. • Practise regular slow and deep breathing. Do this at regular intervals throughout the day, particularly when you begin to feel tense and stressed. As you exhale say the word ‘calm’ to yourself in a soothing manner.

• Begin learning to relax. Develop pleasant imagery (e.g. scenery or pleasant memories) and music which you find soothing and calming, and invoke these images and sounds when stressed. • Learn a form of progressive muscle relaxation. This is where you systematically contract and relax all the muscles in your body to induce a strong feeling of physical relaxation. It is generally best to see your psychologist for initial training and instruction in this area. Diet, Exercise & Sleep Diet, exercise and sleep are three big areas often causing further problems when people have medical conditions. Sometimes medications, treatments, and symptoms such as pain can adversely impact upon appetite, energy levels and sleeping patterns. When coping with medical conditions, it is essential that we do everything we can to maintain a healthy diet, exercise regularly, and sleep well. Some basic strategies and points to remember are outlined below, and can be expanded upon by your psychologist. Diet Make sure you eat regularly throughout the day. Choose foods that are nutritious and preferably enjoyable to eat. If you don’t feel like eating then continue to nibble at foods you can tolerate. If you are restricted in food choices then make sure that no inappropriate foods are accessible (e.g. throw them away so you can’t be tempted). Also, if possible advise family members or friends of what your diet should be and get them to prompt you regularly. Exercise Keeping your body active is essential for both injury prevention and health promotion through the release of body chemicals which assist in making you feel good. Maintaining activity is vital to promote wellbeing. In many cases, your medical condition may restrict your ability to engage in previously enjoyed exercises. In this case it is vital to learn other alternate exercises and engage in these regularly. See your medical or clinical specialist for advice on which exercises you can do and develop a regular schedule of activity.

you maximise your potential for good sleep by: • minimising naps during the day • not consuming stimulants such as tea and coffee in the evenings • exercising during the day so your body is physically tired and ready for sleep at night. Social Support Loss of social support When you have a medical condition it can often be a stressful, frustrating, isolating and lonely experience. Often when you’re not feeling well your opportunities for social contact are reduced through both your own limitations, restrictions (e.g. unable to work with colleagues or engage in social recreational activities), and lack of motivation. Getting the social support you need When you are coping with a medical condition social support has been proven to be an effective form of assistance in maintaining your quality of life. Whilst often previously available forms of support such as work colleagues and recreational friendships may not be available, other sources of social support may still be accessible. The following points provide some suggestions for cultivating quality sources of social support and ensuring these needs are met: • Take the time to think about all the possible people you still have contact with and develop plans to contact some and catch up. • When you do have contact with friends advise them of where you’re at and give them with some hints on how they can best support you. Remember if you don’t tell them how to support you appropriately, then they’ll never know! • Keep regular schedules of contact throughout the week. Book regular lunches, coffees and catch-ups with people. Plan ahead to avoid unpleasant isolating gaps through the week. • If your available social support is inadequate then think about new sources of support such as support groups, hobby and interest groups and volunteer opportunities. Your psychologist can assist in developing and implementing a plan to explore and develop more social support opportunities for you.

Sleep Ensuring you get enough sleep is critical when you have a medical condition. Make sure

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: manager@psyhealth.com.au • Website: www.psycare.com.au 8 / BRIDGE MAGAZINE


Neurorehab Congress 2012 This Congress is dedicated to innovations in neurorehabilitation, and features lectures, symposia and workshops on the full spectrum of progress in the field, by leading experts from around the world. The 7th World Congress for NeuroRehabilitation will be held in Melbourne from 16-19 May 2012. The Congress will be held in conjunction with the 35th Annual Brain Impairment Congress for the Australian Society for the Study of Brain Impairment and the 20th ASM of the Australasian Faculty of Rehabilitation Medicine (RACP). Topics covered include: • Traumatic Brain Injury • Cognitive Rehabilitation for Children • Paediatric Spinal Cord Injury & Disease • Stroke • Gait Disorder • Neurodegenerative Conditions: Rehabilitation Opportunities • Neurorehabilitation in Developing Countries • Imaging & Plasticity • Multiple Sclerosis • Spasticity • Movement Disorder Pre Conference Workshops • Spinal Cord Injury • NeuroOncology • Cerebral Palsy. The Congress will be a forum for the presentation of international research, discovery and innovation, and provide a focal point for local, national and international discussion regarding the latest developments in all major sub groups with the field. The invited presentations will focus on the theme of innovation and new directions in these areas. They will also cover updates in the understanding of the basic science of the condition and an evaluation of newer treatment options in the acute and rehabilitation settings, which includes emerging techniques in the various therapy disciplines. The Scientific Committee also aims to focus on the measurement of long- and short-term outcomes in the evaluation of effectiveness of acute and sub-acute management in key topic areas. An additional topic will involve a discussion of the role and current use of complementary medicine in neuroRehabilitation. REGISTRATION NOW OPEN. For more information, visit www.dcconferences.com.au/wcnr2012/

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Managing fatigue A look at the symptoms and triggers of fatigue, and some strategies to minimise and manage it Fatigue is a common and very disabling symptom experienced by people with Acquired Brain Injury (ABI) or neurological conditions. Some people with multiple sclerosis, for example, describe an overwhelming sense of general fatigue that can occur at any time of the day. It happens without warning, and the person needs to rest immediately before the symptoms get worse. Fatigue is also a problem among carers as they find themselves managing increased workloads and greater responsibilities. Members of the

rehabilitation team understand your position and can recommend coping strategies and support services such as respite care. Consult with your GP or a trusted team member before your own health is affected. What is Fatigue? The fatigue associated with brain injury or neuromuscular damage often appears more suddenly, lasts longer, and takes longer to recover from than ordinary fatigue. Make no mistake; it is real and not a case of mind over matter.


What Causes Fatigue? Fatigue can occur for no apparent reason or after relatively mild exertion. It may be caused by physical activity, but is just as likely to occur as a result of mental activity. Planning the week’s errands, organising a work schedule, calculating a weekly budget or simply reading, can be very draining. We all experience this to some extent, but for the person with brain injury, it happens more easily and much more frequently. Fatigue can be managed with good planning and rest periods, but first carers and the family member affected need to acknowledge that it is real. Symptoms The following symptoms may all suggest fatigue: • Withdrawal • Loss of appetite. • Shortness of breath • Slower movement and speech • Short answers, quieter voice, dull tone of voice • Irritability, anxiety, crying episodes • Increased forgetfulness • Lack of motivation to plan for each day • Lack of interest in things the person normally considers important (e.g. appearance, grooming). Fatigue also intensifies symptoms experienced because of ABI or a neurological condition, such as: • Poor vision • Slurred speech • Difficulty finding words • Poor concentration • Cramps or weak muscles • Poor coordination or balance. The next step is to work out what triggers it and what factors make the symptoms worse, such as holding a demanding conversation for more than 10 minutes or watching a film with a complicated plot. You can then work together to develop strategies to conserve energy. Managing Fatigue Contingency plans: Fatigue may occur at the least convenient times – on public transport or during a meeting. You need to negotiate ways of coping when this happens. You can use specific strategies or call in extra support. Work out contingency plans with your family member. Your neuropsychologist, occupational therapist or physiotherapist can help with suggestions. Assess your environment: Provide an environment that is easy to move around and work in. Think about how and where things are stored; bench heights, entrances, types of furnishing and lighting. For example, some people may find fluorescent lighting or dim lighting more tiring. Assess best hours: Some people function best in the mornings, so complete demanding tasks then. Others function better in the afternoon or

the evening. Organise your routine accordingly. Schedule rest periods: Make a daily or weekly schedule, and include regular rest periods. “Rest” means do nothing at all. Use aids: Use mechanical aids to conserve energy for when it really counts. One man spared his legs extra effort by using his wheelchair to get from his house to the car, then from the car to the church, before walking his daughter, the bride, down the aisle. Break it down: Break down activities into a series of smaller tasks. This provides opportunities to rest while allowing the person to complete the task. Encourage sensible shortcuts. Set priorities: Focus on things that must be done and let the others go. Medication highs and lows: Be aware of changes throughout the day that relate to medication. Is the person better or worse immediately after their tablets? Plan their activities around these times. Sleep: Encourage a regular sleeping pattern. Some people may also need a regular nap — or two — during the day. Fitness: Your family member should maintain fitness within their individual ability, that is, enough exercise to stay fit, but never to the point of causing tension, overtiredness or cramps. Weight: Maintaining a healthy weight helps. If your family member’s condition affects their ability to eat, consult a dietician and speech pathologist to ensure they have a nutritious diet that is easy to manage. Weather: Hot weather can also increase fatigue. Plan around this. Seek support: Ask for advice. In particular, an occupational therapist can visit your home and advise on an energy-conserving plan of For more information, talk to your doctor or condition-specific support organisation. This article has been reproduced with the permission of BrainLink, from their excellent brain injury resource available for free download at www.brainlink.org.au This publication is split into sections covering medical issues, common changes after a brain injury, practical assistance and emotional issues. The website also has a wide range of fact sheets on many other issues. BrainLink is a Victorian service dedicated to improving the quality of life of people affected by conditions of the brain, and providing support to their families.

Lesser known neurocognitive disorders

When we look at the proposed classification of neurocognitive disorders for 2013, there are some that most of us won’t recognise. Here is a brief rundown on the lesser known disorders. Lewy Body disease , is a type of dementia closely allied to both Alzheimers and Parkinson’s diseases. It is characterised anatomically by the presence of Lewy bodies (clumps of alpha-synuclein and ubiquitin protein in neurons). While the specific symptoms vary, core features are fluctuating cognition with great variations in attention and alertness, recurrent visual hallucinations, and motor features of Parkinson’s. Suggestive symptoms are rapid eye movement-sleep behaviour disorder and abnormalities detected in PET or SPECT scans. Prion diseases, also known as transmissible spongiform encephalopathies, are progressive conditions that affect the brain and nervous system of many animals, including humans. The most common one affecting humans is known as “mad cow’s disease”. Mental and physical abilities deteriorate and myriad tiny holes appear in the cortex causing it to appear like a sponge (hence ‘spongiform’). The disorders cause impairment of brain function, including memory changes, personality changes and problems with movement that worsen over time. Prion diseases are not spread by microbes, but by specific proteins called prion proteins. Fronto-Temporal Lobar Degeneration refers to a group of disorders associated with atrophy in the frontal lobe and temporal lobe of the brain, with sparing of the parietal and occipital lobes. It is a fairly common form of dementia in the over 65 years old group, and second only to Alzheimer’s disease for people younger than 65 years. HIV-related dementia: while HIV is well known, most of us aren’t familiar with the dementia it can cause as it progresses. A protein on the surface of the virus can kill brain cells, and also cripples cells that have the ability to step in and take the place of destroyed brain cells. Vascular disease is the cause of the second most common type of dementia after Alzheimer’s disease. While the term vascular disease isn’t that well known, it injures the brain by reducing vital blood flow to brain cells, most commonly through a stroke or series of small strokes. Small strokes can be so minor they are not noticed, but the damage increases over time and leads to memory loss, confusion, and other signs of dementia.

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Loss of taste & smell Following a brain injury many people report that their senses of taste and/or smell have been affected. This may be as a consequence of injury to the nasal passages, damage to the nerves in the nose and mouth, or to areas of the brain itself. Loss or changes to smell and taste are particularly common after severe brain injury or stroke and, if the effects are due to damage to the brain itself, recovery is rare. The effects are also often reported after minor head injuries and recovery in these cases is more common. If recovery does occur, it is usually within a few months of the injury and recovery after more than two years is rare. The two senses can both be affected in a number of different ways and some definitions of the terms for the different conditions are provided below. The two senses are connected and much of the sensation of taste is due to smell, so if the sense of smell is lost then the ability to detect flavour will be greatly affected. Therefore, a disorder of smell will usually occur together with a disorder of taste. Sadly, there are no treatments available for loss of taste and smell, so this information is designed to provide practical suggestions on how you can compensate. Disorders of smell • Anosmia: total loss of sense of smell • Hyposmia: partial loss of sense of smell • Hyperosmia: enhanced sensitivity to odours 11 / B R I D G E M A G A Z I N E

• Phantosmia/parosmia: ‘false’ smells • Dysosmia: distortion in odour perception. Disorders of taste • Ageusia: total loss of sense of taste • Dysgeusia: distortion or decrease in taste • Parageusia: perceiving a bad taste in the mouth • Dysgensia: persistent abnormal taste • Loss of taste and smell after brain injury. Health, safety & hygiene issues • Fire/smoke: fit a smoke alarm, have electrical appliances regularly serviced, remove plugs when not in use and use an alarm to remind you of food cooking in the oven. • Gas leaks: have gas appliances regularly serviced and fit a gas detector. You might want to consider fitting an electric cooker and fire. • Out-of-date food: always eat or throw out food by its ‘use by’ date. If in doubt, throw it out! Clear out the fridge and cupboards regularly. • Identifying products: try to keep products such as drinks, bleach, cleaning products and solvents in their original containers. Make sure they are clearly labelled. • Home hygiene: ask friends/family/carers to help empty rubbish bins and keep toilets and kitchen appliances clean to avoid health risks. • Personal hygiene: be aware of the need to wash yourself, your clothes and bed linen

regularly. Use an antiperspirant deodorant and perhaps a shoe deodoriser too. Ask a close friend or family member to advise on any problems in this area. • Mouth care: it is important to keep your mouth clean and to brush teeth regularly and thoroughly, including brushing your tongue as well. Using mouthwash and dental floss helps. Visit the dentist regularly. • Toxic fumes: take precautions and follow manufacturers advice when using products such as paint, cleaning products and solvents. Wear a protective mask, ensure rooms are well ventilated and don’t smoke. Tips for a healthy, balanced diet Changes to taste and smell This can affect appetite and eating in a number of ways: • The smell of food stimulates the appetite, so loss of smell can lead to reduced appetite and lack of interest in food. • Loss of smell can also lead to a reduction in saliva production, therefore dry foods, such as biscuits and crackers, may be more difficult to eat. • The choice of foods may be limited to those which provide flavour, which can lead to a diet that doesn’t provide a balanced variety of nutrients. • Loss of enjoyment of food can lead to


avoiding eating altogether. • Altered taste may make certain foods, such as meat, taste unpleasant and lead to those foods being avoided. Any of these problems may effect your choice of food and lead to an inadequate diet. It is very important to maintain a healthy, balanced diet and below are some suggestions to help you do this. A balanced diet This is essential for good health. All that is really required is to eat sensibly, choosing a range of foods in the correct proportions. Below are some suggestions to help you do this: • Try to base your meals on starchy foods such as bread, cereals, potatoes, rice or pasta. Aim to include at least one food from this group in each meal. • Try to eat as great a variety of foods as you can. • Have at least five portions of fruit and vegetables a day. • Try to drink the equivalent of about a pint of milk a day. This includes milk used in tea and coffee. Try to use reduced fat milk and be very careful that milk hasn’t gone off, especially in hot weather. • Limit foods containing a lot of fat and sugar. • If you avoid certain foods because they taste unpleasant look for alternatives sources of protein and nutrients. For example, if you cannot eat meat replace it with fish, beans, eggs or milk. If you continue to experience difficulty adjusting your diet or have any other dietary concerns, such as diabetes or Coeliac disease, that make if difficult to vary the foods that you eat, discuss this with your GP. Avoiding using too much salt Loss of sense of taste may make people likely to add too much salt or other flavourings, such as garlic or chillies. Avoid too much salt by: • following a recipe or routine to avoid over-

DRINKING and alcohol Loss of taste and smell can also affect the amount of fluids you drink, which may result in dehydration. It is also possible to have too much caffeine or sugar in hot drinks to try to make up for an impaired sense of taste. Try to drink eight glasses (totalling about 1.5 – 2.5 litres) of fluid a day. This includes all drinks such as water, juice, tea, coffee, etc, but not alcoholic drinks, as alcohol dehydrates the body. If exercising heavily you will need to drink more than this. • Avoid very strong tea and coffee or try decaffeinated varieties. • Avoid adding excess sugar to tea and coffee. • Energy drinks often contain large amounts of caffeine and should only be drunk in moderation. • Drinking plenty of liquid can help to remove unpleasant tastes from the mouth. ALCOHOL You may have been advised to avoid alcohol because of your brain injury or any medications you are taking. If you are unsure, ask your GP. Tolerance to alcohol can be reduced following brain injury. Try to drink in moderation or not at all. Remember that alcohol will have the same effect on you even if you cannot taste it, and make sure that you know what is in drinks that are bought for you. Try drinking low alcohol or alcohol free beers as an alternative. salting foods during cooking. • trying to add less salt in cooking and not to add salt at the table. Vegetables that are steamed, baked, roasted or cooked in the microwave retain their natural flavour better than when they are boiled. This reduces the need to add extra salt in cooking. To add flavour to foods try different herbs and spices, mustards, lemon juice, vinegar, pickles and sauces — follow directions for using additional flavourings and try not to add extra, as over-seasoning foods can cause indigestion.

and smell. This is especially important if the symptoms haven’t been noticed until some time after the injury. Some medication can also affect the sense of taste. It is worth consulting the GP to see whether the symptoms could be a side-effect of any medication being taken.

Other possible causes It is worth consulting with a GP to find out whether there could be any medical reasons other than brain injury for changes to taste

Summary Brain injury can affect the senses of taste and smell in a variety of ways, which can have a significant effect on quality of life. While there are currently no effective treatments available there is some limited ongoing research. There are strategies you can use to compensate for the sensory loss, and we hope that these suggestions are helpful.

MAKING MEALS MORE INTERESTING • Be imaginative. Use varied colours and textures. • Under-cook vegetables so that they are crunchy. Have a crunchy base with a smooth topping. • Try using seeds, nuts, wholegrain cereals, fresh fruit and vegetables, beans and pulses to add texture. • Adding bacon bits or grated strong cheese, such as parmesan, can add flavour to a meal. • Experiment with using different herbs and spices. • Grate onions, carrots, apples or other suitable fruits and vegetables to add texture. • Serve hot and cold foods together. Try ice cream with hot sauce/ stewed fruit or lasagne with salad. • Make meals a social time with friends and family. • Establish a regular routine for times to eat breakfast, lunch, evening meals and snacks each day. • Use a cookbook and try new and interesting recipes. It is important to note that some of these suggestions may not be suitable if you are experiencing difficulty with chewing, swallowing or choking and have been advised to eat a softer diet. Consult your GP, dietitian or speech therapist for further advice.

Compensation claims If a compensation claim is being made, make sure that the effects on taste and smell are covered in the claim, as they could add several thousand dollars to the money awarded.

FURTHER READING Daisley, A., Tams, R. and Kischka, U. (2009), Head Injury: The Facts, Oxford University Press, Oxford. Powell, T. (1994) Head Injury: A Practical Guide, Speechmark Publishing Ltd, Bicester. Wrightson, P. & Gronwall, D. (1999), Mild Head Injury: A Guide to Management, Oxford University Press, Oxford. This article is reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to helpline@headway.org.uk to discuss any issues raised. 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.. 12 / B R I D G E M A G A Z I N E


Road to recovery Synapse interviews L.B. who faced a long recovery after a near fatal car crash left her in a coma

When did you acquire your first brain injury in the car crash? In 1993, I had an near fatal accident. It wasn’t through any fault of my own. It was not through reckless driving. I am a fervent car lover and like to think of myself as a professionally trained driver (I have qualified in certified racecar driving skills for instance). I was turning out from the side of the road to do a U-turn, when my car was struck violently by a Holden Kingswood doing 90 km/h in a 60 km zone. The bang was so loud that it blew out all the glass windows of the petrol station nearby. People who arrived at the scene said it resembled a war zone, like a bomb had gone off. I had to be cut out of the totalled wreckage with the jaws-of-life. I wasn’t breathing, my heart completely stopped. My head had used the steering wheel and the windscreen as a battering ram. My body was covered in many cuts, bruises and contusions. The ambulance guys thought I was dead. Once I started breathing I remained in a coma state. I was rushed to the Gold Coast Hospital. They didn’t have specialised Neuro unit in those days to deal with a brain injury, especially when it was essentially hidden. What was your rehabilitation like? There was no rehabilitation at all. It was horrendous, confusing and insane. My brain injury was completely missed. I think they did a basic x-ray, but that’s about it. My rehab was absolutely nonexistent. Was it bad luck or complete medical incompetence? I certainly drew the short straw. I was bitter at the hospital for a long time about that. When I woke from the coma, the doctors kept on trying to get me up and walk and talk. I kept screaming strange aggressive babble at them, and repeating myself, forgetting what 13 / B R I D G E M A G A Z I N E

I was saying only seconds before. I felt like a frightened caged animal, and that everyone was trying to hurt me. I didn’t even know I was in hospital, I thought I was at my previous uni or at times, waiting at a bus stop! When they released me from hospital the only follow up I got was for my pelvis and whiplash, nothing for the brain injury, which had presented itself quite obviously through lack of air (my heart stopped completely during the crash), the gash on my forehead, the brain swelling, then the startling post-traumatic amnesia, bizarre behaviour, aggression and depression. Since the car crash I had meningitis in 2000, and a brain tumour in 2008, but once again got no rehabilitation or correct diagnoses. My recovery would have been faster if I was diagnosed at beginning to help me understand more and adjust. Prompt assessment and immediate medical intervention are vital when brain injury symptoms present themselves, no matter how mild. How did your family react/respond? There were only my parents around. They were mortally crushed, in total shock. They weren’t helpful in the diagnostic sense, they had no idea I had a brain injury, or even what is was. The worst thing is that everyone expected me to go back to exactly who I was before the crash, and I couldn’t. I was the old me on the day of the crash and now I was a new me. In the blink of an eye I had been altered. The change in a person’s entire personality I think is what frightens people the most, the speed of the transformation, it terrifies them. How was your normal functioning affected? I couldn’t read and write properly for months and I was still expected to complete my uni

studies at home to complete my first year of my Psych degree (which somehow I managed to do). My short-term memory was ridiculous. I was mortally depressed and angry. I damaged all the parts of the brain to do with processing and emotional control. My frontal lobes were hit hard, mainly on the right side. Plus the twisting motion in the crash from spinning around and the whiplash did all sorts of other things to different parts of my brain – on a very microscopic level. Things which most common scans cannot detect. I had terrible headaches. My body was in constant agonising pain all over. My sense of taste had been altered, sweet things tasted bitter. My sense of smell was heightened. I was sensitive to noise and lights. I hated being around crowds. I was always on the verge of panic. On the outside once I was walking again and I looked perfectly fine, but on the inside I was broken, and it was tough personal journey to recovery. How long did it take for some of those affected functions to recover? Many of them still linger 18 or so years on in tiny bits here and there. I don’t know if people ever fully recover, they just have to make the best of what they come out with and need to remain positive. I think I have recovered to the best I can be. Keeping in mind, I never had rehabilitation or effective assessment immediately, which is paramount. Do you still have some impaired functioning? The journey is ongoing. Recovery goes beyond the standard two-year thing we always hear about. My brain is mended as much as it is ever going to be. What I mainly deal with now is phantom pain all over my body, pins and needles – it’s my brain sending out incorrect


signals to my muscles. I have horrific headaches that can last for weeks. I still have these odd tidal waves of emotions suddenly rush over me unexpectedly, and I still can get confused and forgot things. Overall, though - I overcome it by being an academic, by being a broadcast telly journalist, and I never letting my experience stop me from achieving, and I never make excuses. The main thing is to move on and be active, to integrate back into society, not to become isolated and insular. I want to be seen as a ‘person’ before I am seen as someone who has a brain injury. It is part of who I am now – but it does not define me. I accept it and carry on with life, family and career. I value life more, I feel more love them ever for family, friends. I feel very fortunate. I also have a massive sense of humour about it. I don’t poke fun at ABI itself, but I have a giggle at me. Laughter really is one of the best medicines around. A good laugh releases endorphins and aids in recovery and regeneration – in fact I even wrote a book about it with the legendary Oscar-winning US comedian Jerry Lewis (he of the Dean Martin and Jerry Lewis fame). How important was your family in assisting you with your recovery? My husband, Wayne (the most patient, loyal, committed man in the world!) met me a year after my crash when I was still recovering, and began his input into the long journey of finding out what was the matter. He was my rock, was my absolute best friend. He then had to see me go through further brain injury-related things with meningitis and a brain tumour. He had to do everything and support me, and keep everything on an even keel. He had to have incredible patience and resilience and psychological strength. My daughter who was still quite young back then handled it well too because Wayne explained it all to her, comforted her, made sure her needs were always met. I was so lucky to have them there and now I’m better it doesn’t impact on us daily as a family so much anymore. What would you say as words of support to someone going through rehabilitation? I know it is incredibly hard to have the confidence for that person to get on out there and break the silence of what they’re going through. There’s such a massive stigma about brain injury because we are frightened of it, and people can get it all wrong. The media can perpetuate the myth, heighten the stigma (hence my PhD research and trying to change the way brain injury is represented in TV broadcasting). Once misconceptions are corrected then the media can actively become part of educating many sectors of society about

Acquired Brain Injury (ABI) and help future journalism students to report accurately and sensitively. Every brain injury is so unique so different, so it’s hard to put myself completely in their shoes. It’s a nightmare for many people after a brain injury in the initial phase because it can happen so quick — one day they’re out there playing footy and the next they’re in a hospital unable to walk or talk. Their whole life has suddenly changed in an instant. Their IQ is still the same, but they feel trapped inside their body, their mind refuses to work as it did before. The best thing to do, (if the person is able to still communicate) is to talk about it with others – talking seems to help. Keep active mentally, or physically. Don’t stop being ‘you,’ even if you feel that the ‘you’ every one once knew has left the building. Keep on learning and being freshly educated. Learning new things aids in neurogenesis, in regrowing new neurons and new connections forming. It can help your ABI cognitive processing not to get worse. I kept learning through academia, but you can do it in many other ways: reading, crosswords, sport, TV presenting . . . anything! Positive things can come out of having an ABI too. Sounds odd I know, but can make a previously timid person stronger, it can build resilience and confidence, it can bring people closer, it can give you new goals, it can make you see life in a whole new appreciative light. That is not to underplay the serious emotional

and cognitive impact of brain injury, but it is another perspective to perhaps mull over. Keep a sense of humour and don’t put yourself down, or be too harsh on yourself and others – if you’re not meeting your own high expectations of instant recovery. Take help when it is offered and value life. You are an important person, you do matter, you will conquer this eventually. I did. What life lessons have you learnt from your ABI experience so far? ABI can happen to anyone, at any level, from mild to severe. It can be from something simple – a slip on a wet floor, a virus, to something drastic like my crash. It doesn’t discriminate and it is a very personal, individualised event. In my journey I have met so many inspirational people who have shared their stories candidly with me. They didn’t do this just because I was a D-List TV celebrity and all that, they did it because I was having the same frightening issues as they were. There are so many commonalities there. It doesn’t matter what we’ve all done for a living, where we come from, what colour our skin is, it just matters we need to share experiences. It really shows me that people who have recovered or are recovering from brain injuries really do want to engage with others and get the stigma lifted. Furthermore, the courage I have seen from people far worse off than numpty old me, is just incredible. There have been tragic stories too, but for the most part it’s all been good, been encouraging.

brain injury documentary & other achievements L.B. Wilshere-Cumming’s story is one of not letting a brain injury slow her down. She is a professional broadcast journalist, television presenter and published author with a number of degrees under her belt and is currently a PhD research student in ABI and media representation. L.B. has already produced a documentary called Demystifying Brain Injury in conjunction with 31 Digital Television, and she is now working on a new larger commercial ABI documentary that is slated to screen nationally on major networks. This future documentary will feature inspirational stories of people recovering from brain injuries, along with L.B.’s journey meeting them. We will talk with L.B. about her work and related PhD research in the next issue of Bridge. Visit L.B. Wilshere-Cumming Productions at http://wilsherecummingproductions.angelfire.com for further information about her career, life, TV, book work and passion for race driving. 14 / B R I D G E M A G A Z I N E


Eating & drinking equipment More great assistive technology from the crew at LifeTec

A variety of equipment is available to assist people who have difficulty eating and drinking due to hand weakness, pain, stiffness, tremor, lack of coordination, or who are only able to use one hand. It is important to be seated in a comfortable and supportive chair, and close to a table at the right height. Features of a good chair include a sturdy chair which has adjustable seat height, contoured backrest and armrest. Sitting in a stable relaxed posture, within comfortable reach of food and drink items, enables better use of existing abilities. Tables with a cut out section further increase the seated person’s stability, and decrease the requirement for extended reach. CUTLERY, HANDLE ADAPTATIONS & ORTHOSES Standard cutlery can be made easier to use

by enlarging the handle with foam tubing or clay. Cutlery is also available with ready made built-up handles. Angled knives enable a stronger grip and allow a sawing action to be used to cut food. Rocker knives enable people to cut food using one hand. Some knives combine the rocking knife action with a fork for entirely one-handed eating. People with limited or no grasp can use a Velcro strap which wraps around the hand and also around the handle of a fork/spoon to hold it in place. Some straps have a pocket in the palmer section so the cutlery can be inserted and removed easily from hand or limb. Spoons and forks with an angled shaft can assist those with limited arm movement to manipulate food into the mouth. Standard cutlery can sometimes be bent for this purpose and the handle modified to suit their needs. Weighted cutlery may reduce spillage of food for individuals with tremors. PLATES & NON-SLIP BASES A clip-on plate guard can be added to most plates to provide an edge to push against. This may help to prevent spills for people with coordination, tremor or vision issues, and may help to push food onto the spoon for people who can only use one hand. A variety of no-slip materials are available or can be improved to prevent plates or cups slipping. This may be useful for people with tremor or lack of coordination, or for people with the use of one hand only. Suction cups on the bottom of a plate or bowl may also be useful, and may hold items in place more firmly than many non-slip products.

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CUPS, BEAKERS & STRAWS Two-handed mugs may be useful for some people, to lift or stabilise a cup. Weighted mugs may also be useful in reducing tremor. Lightweight cups can assist those with upper limb weakness and coordination problems. Insulated mugs are useful to prevent burns, as well as to help keep liquids hot or cool. An outward lip or flange at the base of a cup can assist to prevent spills. Another option is a separate base that the cup fits into. Cups with a cut out section are useful for people unable to tilt their head backwards. They also prevent the rim of the cup pressing on the nose of a person with an uncontrolled bite reflex. Cut out cups also enable the carer to view the contents of the cup when giving someone a drink. Straws eliminate the need to lift, hold and manipulate the cup in a coordinated way. Straws that feature a one-way valve reduce the effort required to draw fluids up through the straw, and are useful for people with difficulty sucking and swallowing. Beakers or cups which feature a lid with a spout are useful for preventing spills and regulating the flow of liquid into the mouth. Cups with large handles may assist those with weak grasp by allowing them to place their whole hand through the handle. Reproduced with permission from LifeTec. Visit their website at www.lifetec.org.au for all their fact sheets.


Dressing & grooming equipment The ability to dress and groom themselves is very important to many people. here is a range of equipment which can be used by people to facilitate independence in these areas. DRESSING AIDS Before considering equipment to assist with dressing, consider the type of clothing to be worn. Some clothes are easier to don or remove, such as a t-shirt or polo shirt without buttons, or pants with an elastic waist rather than a zipper. There are also suppliers that make modified clothing that may be easier to don or

remove. An example is clothes with velcro fastenings instead of buttons or zippers. Stocking, sock and pantyhose aids may be helpful for people who have difficulty bending down to reach their feet. The clothing item is pulled over a flexible plastic gutter, and long cotton tapes are used to pull the plastic gutter up, bringing the clothing item with it. Special aids to assist in putting on compression stockings are also available. A dressing stick is a stick with a hook on one end. It can be used to push off or pull on hardto-reach items of clothing. Loops sewn onto clothing can make it easier for someone to use a dressing stick, by providing something for the stick to hook on to. Long-handled shoehorns may assist with putting shoes on by reducing the need to bend. A button hook can make doing up buttons easier for people who only have the use of one hand, or people who have limited hand function. Button aids are used by passing the aid through the buttonhole to catch the button and then pulling the button back through the hole. Elastic laces stretch and can remain tied up while putting on/taking off shoes. Spring lace fasteners may also be used to firmly hold the laces together, and can be operated with one hand.

Shoes with velcro fasteners may be easier to fasten for people with limited hand function. GROOMING AIDS Long-handled combs or brushes can assist people who have limited arm and shoulder movement. Mounting equipment, such as hair dryers, can be useful for people with only the use of one hand, coordination difficulties or limited hand function. be mounted using suction caps. For people with limited hand function, a universal cuff may be used to enable them to hold items such as brushes and razors. A universal cuff is a velcro strap which wraps around the hand. The object is placed in a tubing pocket so there is no need to hold it with your fingers. Electric razors and toothbrushes may be easier for some people to use as they can reduce the amount of hand and arm movement required. Long-handled nail scissors can make reaching the toes easier. Reproduced with permission from LifeTec. Visit their website at www.lifetec.org.au for all their fact sheets.

LifeTec is a not-for-profit, non-government Queensland organisation providing professional information and advice on assistive technology. LifeTec assists a wide range of people who wish to remain independent in their homes for as long as possible, as well as family members, children and adults who are living with a disability or supporting a person with a disability. Services include individual consultations, free community talks, displays and interactive workshops for health professionals. These services are delivered by health professionals from our Brisbane or Townsville Centres, or throughout rural and remote Queensland as we visit each region during the year. Our health professionals are available six days a week (Monday to Saturday) to assist any caller or visitor. For more information contact 1300 885 886 (Queensland only), email mail@lifetec.org.au or visit www.lifetec.org.au

independent living centres in other states ACT SA VIC

Ph: 02 6205 1900 Website: www.health.act.gov.au/ilc Ph: 08 8266 5260 Website: www.disability.sa.gov.au Tel: 03 9362 6lll Website: wwwyooralla.com.au

NSW TAS WA

Ph: 02 9890 0940 Website: www.ilcnsw.asn.au Tel: 03 6334 5899 Website: www. ilctas. asn. au Tel:08 93Bl 0600 Website: www.ilc.com.au 16 / B R I D G E M A G A Z I N E


Overcoming brain injury – a family’s love of language & culture Anna Petrou talks with a Columbian family where the father and son have both acquired a brain injury

When a family is impacted by Acquired Brain Injury (ABI), each member may experience a period of emotional crisis, while the loved one is often left to come to terms with some loss of normal functioning. This was particularly the case for a family from Columbia where the father and son have both acquired brain injuries. Through their love of language and their culture this family is learning to overcome their challenges. Libardo, Dora and Julian Saavedra left their family home in Bogota Colombia twelve years ago to seek refuge in Australia. It would be a very stressful period for the family as this decision to immigrate was prompted by Libardo’s life being threatened as a result of his writings on drug trafficking and the guerrilla movement. As an anthropologist he was well published, and his own shrewd assessment of the impact of corruption in his own country compelled him to write of it in his work. Shortly after their arrival, Libardo experienced a stroke. With the support of his wife Dora and son Julian, Libardo and his family successfully worked on adjusting to the impact of ABI as well as settling themselves. Libardo had some loss of mobility and now relies on a walking stick. Thankfully his speech, love of writing and language were preserved, abilities that would play a pivotal role in assisting the family with weathering the further challenges to come. Despite multiple strokes, Libardo continued to write, and in 2004 successfully completed and published a book called The Hispanic Communities. His book pays homage to the influence of Hispanic cultures across the globe, and he chose to dedicate his book to Dora. Libardo’s dedication to recovery could easily be summed up by the opening comment that he 17 / B R I D G E M A G A Z I N E

makes in this book: “To all the Hispanics that live outside their country, proudly showing to the world that they can stand out by working hard, with integrity, joy and optimism.” Tragically, a few years later, Libardo’s son Julian was involved in a motor vehicle accident. Just graduated from high school and due to commence study in linguistics, Julian walked onto a road and was hit head-on by a car. He was under the influence of alcohol and according to Julian his friends at that time “were numerous but they were not the kinds of friends that looked out for me”. Julian was rushed to the Royal Brisbane Hospital with a severe traumatic brain injury. His cheekbone was fractured, the right side of his body was injured, and his right lung had collapsed. He had multiple fractures to his pelvis and skull. Later his doctor would say that because his injuries to his skull allowed the blood to flow-out rather than build-up inside his cranium it may have played a part in preventing further brain damage and loss of functioning. Julian received rehabilitation at the Princess Alexandra Hospital where he underwent occupational therapy and speech therapy. After two months of therapy Julian recovered his speech. “I remember waking up in the Royal Hospital and trying to speak but the words did not come out; thankfully with great effort it gradually returned,” said Julian According to Julian he remembers being in a wheelchair, being pushed around and craving solid food. Dora, a constant support to Julian at this time, would push Julian in his wheelchair to the outside gardens so he could feel the sunlight.

Dora was now an important emotional support for both Libardo and Julian, and it would be at her suggestion that Julian set himself the goal of translating a book into Spanish. “It was an opportunity to search for an occupation for him, to assist with his concentration. I didn’t know how useful it would be but it served as a great motivation for him,” said Dora. Before his accident, Julian had set his sight on linguistics as a career, and with his recovery he was able to continue this pursuit. With the support of his family, Julian set himself the goal of translating a book called Surviving Acquired Brain Injury produced by Synapse. Chapter by chapter, Julian translated the book with his mother and father proofreading and adding suggestions and changes as they went. After four months the translation was complete. “I found the book to be an excellent help, particularly the chapters related to motivation and sexuality,” said Julian. In 2011, Julian completed his project. Over 300 pages of text were translated into Spanish. The project brought them all closer together. Working together on each chapter, they all learnt about brain injury and the ways that it can change someone’s life. As they translated chapters this would also be sent to the rest of the family back in South America so they could also learn about ABI. Julian is now translating another Synapse publication called ABI – The Facts. ”I feel like a survivor, motivated and keen to take the next step and to move on with life”, says Julian. Julian believes that the hardest thing to


accept is that life has changed. Clearly Julian is learning to adapt and is working toward focusing on his strengths. “There is not much help for people like me. I have a brain injury but this is not an intellectual disability.” Julian is now twenty years old and is acutely aware of the financial difficulties that he must overcome if he wishes to move out from his parents’ home and have his own place. Needing money to improve his community access and to have the chance to socialise with other people of his age is another concern for Julian. He is interested in learning Russian now, and when he isn’t translating he listens to music (Bjork is a favourite) and likes watching the work of international film makers. Julian visits his extended family in Colombia occasionally, and has set his sights on advancing his skills. His next goal is to enroll at a university. “I am lucky to have my mum next to me, without her I would be lost.” “I don’t want to offer advice to others with ABI because each person’s journey is different. However, what I would say is that it helps to work very hard at your rehabilitation and be patient.” “At some point everything looks grim and destroyed, but in real life, it is not like that, it can get better”, he said.

Julian now feels strongly against excessive alcohol consumption, particularly by people of his own age group. He believes that “you really don’t need to consume a lot of alcohol to have fun and party”. ”Alcohol can destroy their lives, I now know that it’s best to pay attention to what my parents say, they are just trying to avoid their children getting into trouble.” “If you’re a young person with an ABI don’t feel down or sad or destroyed because

everything will improve, everyday you are alive you are blessed. Be strong.” Synapse would like to sincerely thank Julian Saavedra and his family for their support and hard work in translating our publication. We wish them well for the future.

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MS Neurorehab Professor Jürg Kesselring from Switzerland will be presenting his latest paper at the 7th World Congress for NeuroRehabilitation in Melbourne this May. Below is an abstract of his upcoming presentation. Neurorehabilitation in multiple sclerosis– applied neuroplasticity Re-organisation of structures and functions in the brain are the basis of learning. Plastic changes occur in normal as well as in diseased brains, and can be enhanced by task-specific therapeutic interventions (or neurorehabilitation. The variety of symptoms and functional deficits with Multiple Sclerosis (MS) can lead to a broad range of functional impairments and disability. Even with newer immunomudulating therapies, the course remains progressive. The symptoms themselves – loss of independence and participation in social activities – are responsible for the progressive decline of quality of life. The main objective of a comprehensive rehabilitation program is to ease the burden of disease by improving self-performance and independence. Restoration of function is not the key effect of rehabilitation in MS. As rehabilitation measures have no direct influence on the ongoing disease process and progression of the disease, compensation of functional deficits, adaptation and reconditioning together with other non-specific effects (management of specific symptoms and impairments, emotional coping, selfestimation) are more important in the long term. Several of the many symptoms of MS are amenable to drug therapies which have been proven in careful evidence-based analyses to be effective (e.g. fatigue, spasticity, bladder, bowel and sexual disturbances, pain, cognitive dysfunctions etc). Newer studies in MS patients show, that despite the ongoing progression of the disease process, rehabilitation is effective by improving personal activities and participation in social activities leading to better quality of life. After comprehensive inpatient rehabilitation, improvement overlasts the treatment period for several months. Quality of life is correlated more with disability and handicap rather than with functional deficits and progression of the disease.

Stroke Stroke is an interruption of blood supply to part of the brain that damages or destroys brain tissue

Nutrients and oxygen are passed to each cell in the brain through the arteries. If these become blocked, bleed or break, then the brain tissue that was being nourished deteriorates. When this lack of blood supply occurs to the heart it is called a heart attack. When it occurs in the brain it is called a stroke. In fact, in America a stroke is called a “brain attack”. According to the Australian Institute of Health and Welfare report Heart, stroke and vascular diseases, Australian facts 2004, stroke is Australia’s second biggest killer after heart attack, and 90% of Australian adults have at least one modifiable (i.e. can be improved) risk factor. Although stroke is rarely immediately fatal, the Stroke Foundation report that One in five people having a first-ever stroke die within one month and one in three die within a year. Types of stroke A blood clot can cause a blockage in an artery. These clots can occur in other parts of the body then break up and travel to the brain where they lodge in the smaller blood vessels. Fatty lipids called plaques may build up on the walls of blood vessels and restrict blood flow. As a result symptoms usually develop slowly but may be rapid in some cases. An aneurysm is a localised swelling of a blood vessel. This can be caused by disease, congenital weakness of the blood vessel, or injury. If an aneurysm does not burst it can become blocked, leading to a stroke through obstruction. A haemorrhage is loss of blood from a blood vessel. A ruptured artery may bleed blood into the brain, or alternatively fill the space around the brain and creates pressure. Effects of stroke The after effects of a stroke vary widely for each stroke victim as different parts of the brain are responsible for thought processes, comprehension, movement and our senses. The extent of blood shortage also determines the effect of the stroke. Effects can include: • Paralysis and/or loss of feeling • Impairee vision • Loss of speech or comprehension • Inability to recognise objects that can be

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recognised and used • Inappropriate laughing or crying • Poor judgement and impulsivity • Short attention span • Difficulty expressing emotions • Communication problems • Poor coordination. How to recognise a stroke A stroke is not necessarily a major event, and may not be recognisable as a stroke — it may only result in someone stumbling or having a moment of blankness akin to an absent seizure. It is vital to treat a stroke immediately call an ambulance. FAST The FAST test is an easy way to recognise and remember the signs of stroke. Using the FAST test involves asking three simple questions: • Face: check their face. Has their mouth drooped? • Arms: can they lift both arms? • Speech: is their speech slurred? Do they understand you? • Time: if you see any of these signs call an ambulance straight away. Recovery from stroke Recovery after a stroke depends on a number of factors including: • the type and severity of the stroke • the part of the brain involved • the extent and nature of the damage • existing medical problems • type of treatment and rehabilitation. This article is a condensed version from the wide range of Synapse fact sheets at www.synapse.org.au reducing the risk of a stroke • Regular exercise • Reduce cholesterol levels by healthy eating • Don’t smoke • Drink alcohol in moderate amounts, if at all • Lower blood pressure by avoiding stress • Seek medical advice if you have high blood pressure, a family history of stroke, heart problems, high cholesterol levels, diabetes mellitus or other conditions that increase your risk of stroke.


Research on neuroplasticity

Parkinson’s disease

Randolph J. Nudo, Ph.D. from the Kansas University Medical Center has written over 100 papers about neuroplasticity and will be presenting his latest paper at the 7th World Congress for NeuroRehabilitation in Melbourne this May. Below is an abstract of his upcoming presentation. Harnessing the Potential of Neuroplasticity to Improve Recovery after Brain Injury

Illustration of Parkinson's disease by William Richard Gowers, 1886 Parkinson’s disease is a degenerative disorder of the central nervous system where cells that generate dopamine die off in part of the midbrain (the substantia nigra). The most obvious symptoms at first are movement-related, such as shaking, rigidity, slowness of movement and difficulty with walking. Later, cognitive and behavioural problems may arise, with dementia commonly occurring in the advanced stages. Other symptoms include sensory, sleep and emotional problems. It is more common in the elderly, with most cases occurring after the age of 50. The cause is still unknown, but many risk and protective factors have been investigated: the clearest evidence is for an increased risk from exposure to certain pesticides, and (surprisingly) a reduced risk in tobacco smokers. Diagnosis of typical cases is mainly based on symptoms, with tests such as neuroimaging being used for confirmation. Famous cases The actor Michael J. Fox was diagnosed in 1991 when he was 30 years old. Fox’s work to raise funds and public awareness led him to be named one of the 100 people “whose power, talent or moral example is transforming the world” in 2007 by Time magazine. Muhammad Ali has been called the world’s most famous Parkinson’s patient. He was 42 at diagnosis although he already showed signs of Parkinson’s when he was 38. Whether he has actual Parkinson’s disease, or a parkinsonian syndrome caused by boxing, is still an open question. Treatments Modern treatments are effective at managing the early motor symptoms of the disease, mainly through the use of levodopa and dopamine agonists. Medications usually become ineffective eventually, and at the same time produce a complication called dyskinesia, marked by involuntary writhing movements. Diet and

some forms of rehabilitation have shown some effectiveness at alleviating symptoms. Surgery and deep brain stimulation have been used to reduce motor symptoms as a last resort in severe cases where drugs are ineffective. Research directions include investigations into new animal models of the disease and of the potential usefulness of gene therapy, stem cell transplants and neuroprotective agents. Medications to treat non-movement-related symptoms of PD, such as sleep disturbances and emotional problems, also exist. New areas of research Gene therapy involves the use of a noninfectious virus to shuttle a gene into a part of the brain. The gene used leads to the production of an enzyme that helps to manage symptoms or protects the brain from further damage. In 2010 there were four clinical trials using gene therapy.1 There have not been important adverse effects in these trials although the clinical usefulness of gene therapy is still unknown.1 One of these reported positive results in 2011.2 Neuroprotective treatments involve several chemical compounds such as GDNF have been proposed as neuroprotectors. However, none of them have been conclusively demonstrated to reduce degeneration to date.1 Stem cells, or neural transplantation, is another research direction. Early attempts at cell transplantation in the 1980s ran into many problems, but stem cell transplants are a recent research target because stem cells are easy to manipulate. Reproduced under the GNU Free Licence Agreement from pages on Wikipedia at en.wikipedia.org 1 Obeso JA, Rodriguez-Oroz MC, Goetz CG, et al. (May 2010). “Missing pieces in the Parkinson’s disease puzzle”. Nat. Med. 16 (6): 653–61 2 Lewitt PA, Rezai AR, Leehey MA, et al. (April 2011). “AAV2-GAD gene therapy for advanced Parkinson’s disease: a double-blind, sham-surgery controlled, randomised trial”. Lancet Neurol 10 (4): 309–19.

While substantial functional recovery occurs spontaneously after Acquired Brain Injuries, residual deficits frequently persist. Prospects for more effective strategies to promote functional recovery have been bolstered by recent clinical trials demonstrating significant improvement after a program of repetitive training of the impaired limb. The search is now on for adjuvant therapies that may enhance the adaptive effects of behavioural experience. Electrical stimulation of the brain has considerable appeal due to the ability to control the location, dose and timing of neural activation. Pre-clinical animal studies have indicated safety, feasibility, and efficacy of combining rehabilitation and concurrent epidural or subdural cortical stimulation. While epidural stimulation in humans appears sufficiently safe, efficacy has yet to be demonstrated in clinical trials. Potential reasons for this failure in translation, and implications for the design of future trials will be discussed. In addition to invasive techniques for brain stimulation, non-invasive methods have gained considerable popularity in post-stroke intervention studies. These include transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS) in combination with rehabilitative training. Mechanisms for driving plasticity using noninvasive stimulation also will be discussed. Finally, the initial promising results from these recent brain stimulation approaches have now set the stage for a new age of device-oriented technologies for brain repair. Smart prosthetic devices, incorporating sophisticated recording, stimulating and digital processing modules, are now being developed to shape brain connectivity after injury. We have recently demonstrated the ability of cortical areas remote from an infarct to form new corticocortical connections spontaneously over long distances. It is likely that these novel connections play a role in functional recovery after cortical injury. We are now combining neurobiological tools with state-ofthe-art implantable device technology to develop a novel electronic microsystem that will be used to build functional bridges between disconnected brain regions, potentially guiding post-injury axonal sprouting. We anticipate that such smart prosthetic devices will be useful in optimising recovery potential after Acquired Brain Injuries.

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Tracking progress Paul Gianni recounts the things that motivated his remarkable recovery after his brain injury

While in the hospital, I carried a three-ring binder that held all my notes, appointments and served as a diary so I could track my progress. In the beginning, all my progress notes had to be written by the doctors and therapists since my strength and coordination (and thus my ability) to write were all impaired or non-existent. In it I also have my first attempts at writing my name after regaining semiconsciousness. Those scribbles looked like something a child might do. The letters were large, ill formed and basically readable. This binder also held my daily schedule so I would know which area and therapist to see next. I would have to say that of all therapies, my two favorites were physical therapy and speech/ memory therapy. In Hindsight Looking back, I can probably explain the reason for those two being my favorites — I was driven by immediate results and I could see advances made daily. I would attend those therapy sessions twice a day, and would notice daily that I could remember a little more, speak a little more clearly, walk a little further, and lift a little more weight. These advances seem trivial to some, but they meant the world to me as I slowly recovered. I Need More In the evenings, other patients would gather in what was called “The Great Room” to converse and relax after the days’ therapies. During these periods, I would hear the focus of discussion generally turn toward negative topics. Since I was already depressed enough with partial paralysis, memory problems and disfigurement, I did not want to partake in their little talks. Instead I sat in my room and thought (or dreamt) of what I would do if I was not in hospital but employed.

What a Shock! Then it struck me one afternoon as if somebody had slapped me with a board; suddenly I looked up at the clock and noticed it was half past twelve. I thought to myself, “What am I doing sitting here? I should be running to meetings, having a terrible lunch and getting some work done, not sitting in some hospital.” At that point, my stay in the hospital’s rehabilitation wing was completely different. I had a purpose … a mission! Motivation With my shocking new knowledge, I attacked my therapies with new vigor and an absolute need to recover quickly. In the evenings while the other patients sat about in the great room, ate ice cream and drank soda, I returned to the physical therapy room to exercise. I lifted weights, walked on the balance beam, stretched, rode the exercise bike; everything I thought would help me get out of there faster. My knee kept aching painfully, but the doctor insisted I was fixating on an imaginary problem, which is common. Nevertheless, with a new urgency, I pressed onward. Nightly I would sneak back into the physical therapy room, turn on very few lights so I wouldn’t draw attention to myself and then exercise on whatever equipment was available. Some of it was locked away, so my regimen

was limited. Also, I was unable to access all of the different therapy facilities, and some of the equipment for other things needed guidance, so I stuck with what I could do alone. All that time I had been wearing hospital garments and slippers. I had relatives bring things I used to do so I could re-acquaint myself with them, things such as a neck tie and calculator. I did not want to be obsolete or useless when the time came for me to get out of the hospital. You cannot imagine the tears that poured from my eyes as I recalled how to tie a necktie and my shoes! I had done it! This was my first bit of proof, I thought, that I do NOT belong in here! Results Differ Since the outcome of each head injury is unique, not all readers can expect the same things I have, for I have truly been lucky. If survivors’ families and caregivers are considerate, encouraging, patient and understanding, progress will be recognised. However, since not all survivors are able to recover to the same level of functioning, pressure and anger should be avoided. Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from www.lapublishing.com/blog

possible motivators during rehabilitation • Post pictures in various areas of favourite pastimes* • Encourage them to push themselves a little more each day • Post awards, photos, certificates etc. that were earned in prior activities* • Discuss both past and future plans • Always congratulate the survivor on each accomplishment, no matter how minor it may seem to you • Avoid pessimism to the absolute greatest of your ability, as substance abuse and suicide attempts are very frequent among survivors because of their changed abilities. * Caution: Do this only if the survivor will be able to do those things again!

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Supporting Recovery Mental Health Community Service Plan 2011-2017 Will this new initiative make a difference for Queenslanders?

A new community mental health plan for Queenslanders was launched late last year, aiming improve access to high-quality, community-based care and support services for people with mental illness. The plan is split into five stages: • 1 Promotion, prevention & early intervention • 2 Integrating & improving the care system • 3 Participation in the community • 4 Coordinating care • 5 Workforce, information quality & safety. The third stage, “participation in the community” is next, with the goal of building “capacity to assist and support people with mental illness to live full and meaning full lives in the community.” This has been broken into seven key focus areas; • Consumers and carers • Respond early • Community-based support • Clear support pathways • Cultural inclusion • A valued workforce • Sector sustainability. Developing the plan In 2009 the Department of Communities sought the views of consumers, carers, government, non-government organisations and other key stake holders to highlight their expectations for mental health services, with a number of key features identified: • Consumer and recovery-focussed services • Active engagement of people with lived experience of mental illness in the planning and operation of community-based services • More support services, resources and training for carers to assist them in their caring roles and in maintaining their own mental and emotional wellbeing. • Funding models that enable flexibility in the delivery of services • Support for non-government service providers to build their capacity, capability, sustainability and cultural responsiveness.

• Simplified and streamlined referral processes between clinical and non-clinical service providers • More research, innovation, collaboration, and knowledge-sharing to develop and implement best practice service models • More investment in prevention and early intervention strategies. Evidence suggested that a dedicated, stand alone Mental Health Commission would improve the mental health system’s ability to focus on the individual needs of clients. Work to establish the Qld Mental Health Commission by July 1st 2012 has already begun. Stage three of the plan acknowledges the need to build on the strong role of non-government organisations that deliver support services. Further it recognises that the mental health of Aboriginal and Torres Straight Islander people is linked to their social, cultural, spiritual and emotional wellbeing, and acknowledges their resilience and connection to the land. Will it make a difference? This current undertaking by the government represents a significant and long overdue response to the needs of people living with a mental illness; however as figures show 80% of the population is at risk of mental illness (directly or indirectly) one cannot underestimate the enormity of the challenges ahead. Of particular concern for people with a brain injury is whether it will address long standing problems with comorbidity issues. To date, if a person with a brain injury also presents with a mental health issue, services are not only poorly equipped to provide appropriate support, but will often turn the person away for not meeting their criteria (or exceeding their criteria by having a comorbid disorder). Synapse, along with other organisations, will be watching closely to see if this plan makes a difference for people with a brain injury, or overlooks critical issues that have been ignored for far too long.

Research on brain activity Dr Maurizio Corbetta of the Washington University School of Medicine has been researching how the brain processes information. He will be presenting his paper at the 7th World Congress for NeuroRehabilitation in Melbourne this May. Below is an abstract of his paper. Spontaneous brain activity: a key for understanding the mind and the pathophysiology of brain diseases Traditional accounts of brain function emphasise the role of “feedforward information processing” – our brain takes in information from our senses, analyses this and acts accordingly. This approach has been successful in linking activity recorded from single neurons to perceptual decisions1. However, a different class of models suggests that the brain is not a passive analyser driven by sensory information, but that it actively generates and maintains predictions (priors) about forthcoming sensory stimuli, cognitive states and actions2. This class of models emphasises the role of spontaneous activity in maintaining active representations that are modulated, rather than determined, by sensory information. Accordingly, spontaneous activity should not be random (as often implied by its dismissal as mere ’noise’), but organised into structured profiles that reflect the functional architecture of the brain, possibly encode traces of previous behaviour, or even predict future decisions. New evidence reveals that the spontaneous ongoing activity of local circuits result from a global balance between excitatory and inhibitory synaptic currents. At the level of large-scale cortical circuits, organised patterns of spontaneous or intrinsic activity have been recently described in the resting state, hence Resting State Networks (RSNs)3. In my lecture I will describe the topography and functional organisation of RSNs in the human brain, their neurophysiological basis, and their potential functional significance 4,5. Finally, the importance of RSNs for clinical neurology as a bioassay of brain function will be illustrated in the case of stroke, in whom we observe that abnormality of interhemispheric communication, even in the absence of structural damage, seems to correlate with behavioural deficits of movement and attention. 1. Shadlen M, Britten KH, Newsome WT, Movshon JA. A computational analysis of the relationship between neuronal and behavioral responses to visual motion. Journal of Neuroscience. 1996;16:1486-1510 2. Llinas R, Ribary U, Contreras D, Pedroarena C. The neuronal basis for consciousness. Philos Trans R Soc Lond B Biol Sci. 1998;353:1841-1849 3. Biswal B, Yetkin F, Haughton V, Hyde J. Functional connectivity in the motor cortex of resting human brain using echo-planar MRI. Magnetic Resonance in Medicine. 1995;34:537-541 4. Deco G, Corbetta M. The Dynamic Balance of the Brain at Rest. The Neuroscientist. 2010;in press 5. Lewis CM, Baldassarre A, Committeri G et al. Learning sculpts the spontaneous activity of the resting human brain. Proc Natl Acad Sci U S A. 2009;106:17558-17563

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Visual disorders An injury can disrupt the complex subsystems in our brain that provide our eyesight.

A brain injury can lead to focussing problems, eye muscle coordination deficits, changes in eyeglass prescription, and peripheral vision changes. The type and extent of any visual problem depends on the severity and location of the injury. Even when visual problems are diagnosed there is often little vision rehabilitation offered. This is unfortunate as treatment often provides relief from visual symptoms. Some symptoms to look for are: • Headaches from visual tasks • Blurred or double vision • Sensitivity to light • Inability to concentrate or focus • Reading or comprehension difficulties • Trouble judging distances • Sore eyes • Loss of visual field. If you find it difficult to process visual information you may be straining without realising it. A general sense of fatigue can arise from visual problems. Causes Trauma can cause damage to parts of the brain responsible for visual information processing. Even if the head does not hit anything, whiplash can cause damage. Trauma may injure arteries, stretch nerves or damage the vertebral column itself. It can also create soft tissue damage that may cause eye muscle coordination problems and other symptoms. Common visual problems Dry eyes This can result when nerves or muscles of the eyelids are affected. Symptoms are often relieved with the use of the correct eye drops. In bad cases plugs placed in the tear ducts can solve the problem. Double vision This condition may cause confusion and disorientation. People experiencing this condition are often given an eyepatch to cover one eye, although it reduces the field of vision and interferes with daily function. Double vision can often be prevented without an eye 23 / B R I D G E M A G A Z I N E

patch, through the use of prisms and vision therapy. Prisms are used to shift objects in the field of vision. They can correct problems between body image and perception of space.

Some have no trouble, but others find bright light painful. Solutions may include tinted eyewear or amber filters. Sometimes treatment for other problems will reduce photosensitivity.

Loss of visual field This loss is a common visual effect of a brain injury. There are many kinds but the most common is loss of half of the field of vision in each eye. People frequently bump into objects, and easily trip or fall over objects. They may be afraid of leaving home and have difficulty reading. Therapy can help to detect objects on their ‘blind side’ and use constant scanning to compensate. Compensatory strategies are useful, such as always aligning oneself to objects or people so they are centred in the remaining visual field. Prisms and mirror devices are often helpful in cases of visual field loss. Tiny mirrors attached to glasses can expand visual field awareness. If there is some remaining vision, stimulatory exercises can be used to increase light sensitivity and regain some lost function.

Hallucinations Visual hallucinations may be formed objects such as a person or figure or may be unformed such as flashes of lights, stars or flickering distortions. Impaired visual memory Memory is often impaired after stroke or head injury. In rare cases very specific types of memory processing are impaired. A person may no longer be able to recognise faces, objects or letters.

Reading difficulties These may arise from blurred or double vision, jerky eye movements, or visual field loss. Treatment can involve aids such as prisms or using a typoscope to focus on individual sentences. After injury, it can be hard to focus on a page due to nerve damage that affects the eye’s refocussing. Bifocal glasses can compensate. Impaired eye movements may prevent smooth reading along a page. Therapists may be able to rebuild reading skills to reduce problems such as this. Low vision Following a brain injury some people have a normal field of view but can’t read print or watch television with conventional glasses because of low vision. Low vision aids include telescopic lenses for distance vision and a range of magnifying aids for reading and other fine tasks. Photosensitivity Light sensitivity varies from person to person.

Vision rehabilitation After a brain injury, some people experience a natural recovery in the following months. Recovery can be assisted with use of any necessary prescription lenses. Some people will not recover naturally, but may do so with vision therapy. Vision therapy hastens natural recovery as well. A clinician skilled in both low vision and brain injury will understand the interaction of these problems, and be able to make a plan to rehabilitate the visual system. After evaluation, examination and consultation, a clinician will determine how a person processes information after an injury, and where that person’s strengths and weaknesses lie. They provide treatment designed for each person, and frequently incorporate combinations of lenses, prisms, low vision aids and vision therapy activities. The road to recovery needs the teamwork of many doctors and therapists with time and patience throughout the rehabilitative process. Ring the Optometrists Association in your State for a list of optometrists and opthamologists, or visit the national website at www.optometrists.asn.au This is an excerpt from our comprehensive publication, Acquired Brain Injury: The Facts. It is available free of charge within Australia by post, or download as a PDF from our website at www.synapse.org.au


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Zolpidem (Stilnox) Miracle cure for people with a severe brain injury, or just hype? Zolpidem (marketed as Stilnox in Australia and Ambien in the USA) is a prescription drug mainly used to treat sleeping difficulties. Zolpidem has recently come to light in the media as a ‘miracle cure’ for patients (such as Sam Goddard) with neurocognitive disorders like a brain injury. Information on the drug is still emerging so it is important to approach claims of a possible cure with caution. The positive evidence being presented currently for Zolpidem is that some patients with neurocognitive disorders resulting in minimally conscious states (MCS) or persistent vegetative states (PVS) have regained levels of consciousness and cognitive capacities following administration of Zolpidem.1,2,3,8 The alternative use of this drug was discovered in South Africa when a doctor prescribed Zolpidem to his patient with a neurocognitive disorder to assist with sleeping difficulties.2 Thirty minutes following administration of this drug, the patient miraculously ‘regained consciousness.2,5 This enhanced consciousness is only evident for the two to four hours that Zolpidem is in the patient’s system, and as the drug wares off so too does the effect. 2,5,8 This enhancement of the patient’s level of consciousness has led many people to believe Zolpidem is the answer to “getting their loved one back” after a brain injury. Why, then, is Zolpidem not being handed out, over the counter, to patients in need? Foremost, according to the Australian Therapeutic Goods Administration (ATGA), Zolpidem is recommended only for initiating and maintaining sleep for those who have sleeping difficulties. The practising physician would place at risk their professional medical indemnity if they were to prescribe the drug for something other than the purpose prescribed by the ATGA. The physician could be summoned at a later date to explain what evidence they had to substantiate prescribing Zolpidem, and if the

evidence is lacking could incur great penalties including the loss of licence to practise.9 The AGTA is tasked with the role of determining safe and effective practices with regards to medication use.9 As they are yet to state that Zolpidem is safe and effective for use in patients with a brain injury, one must begin to wonder why.9 It could be assumed that this is due to the lack of evidence supporting the use of Zolpidem in people with neurocognitive disorders like a brain injury. Zolpidem has only been shown to reduce cognitive difficulties for around seven to ten percent of adults with neurocognitive disorders, with children yet to show any response. 5,8,12 This group of patients reacts consistently to the drug, indicating that Zolpidem is the cause of the altered consciousness; however the other majority of patients have no positive cognitive reaction to Zolpidem.6,8 Zolpidem has also been known to have many negative effects during its use as a sleeping tablet (which is approved by the AGTA). Many patients reported committing a wide variety of activities (many hazardous) whilst sleeping, and not having any recollection of them (e.g. driving a car, sexual relations, and jumping off a balcony have been reported). This lead the ATGA to put a black box warning on the medication. Aside from sideeffects, Zolpidem has a similar withdrawal mechanism to benzodiazepines such as Valium.10 Withdrawal results in severe symptoms if the dosage is reduced dramatically in a short period of time. Similar to benzodiazepines is a propensity for tolerance build-up. It was noted that over time patients needed more Zolpidem to elicit sleep that came easily initially.10 Lastly, Zolpidem can have negative effects on both the central nervous system and the brain with long-term use.11 Memory loss and reduction in neuroplasticity in the brain have both been

How does zolpidem work? Like benzodiazepines such as Valium and Serapax, Zolpidem acts on GABA-A receptors in the brain. Neurons in the brain fire less often, so we have less anxiety and are more inclined to sleep. While benzodiazepines act on all subunits of the receptor, Zolpidem has a much higher affinity for just the GABA-A1-α subunit. So benzodiazepines result in wider range of effects such as anticonvulsant, reduction in anxiety and effects on memory, which don’t occur with Zolpidem.7,10 So why can Zolpidem sometimes have a temporary positive effect with neurocognitive disorders? This is the focus of current research, and there are many suggestions about the mechanism of ‘regained consciousness’ in people with brain injury. Nyakale et al (2010) suggest that there is physiological brain suppression that occurs following a brain injury. They propose that Zolpidem can temporarily remove this suppression, allowing areas of the brain to function again briefly. Nazareth et al (2011) support this, suggesting it acts to correct altered functional connectivity between affected areas of the brain. 25 / B R I D G E M A G A Z I N E

reported.7,11 This is especially important in neurocognitive disorders as memory is often affected already. Neuroplasticity is what we rely on following a brain injury to rebuild connections, so even if Zolpidem resulted in temporary improvement, there are potentially serious long-term problems to consider. As many people will argue, many of these side-effects only occur in a small amount of the population who take Zolpidem as a sleeping tablet; however it is important to view both sides objectively. The point of this article is not to decide for you what you should do. Synapse understands that many families are looking for anything that may assist their loved ones, and we eagerly look forward to the development of new approaches in treatment. What we have attempted to do here, however, is support you in making an informed choice based on sound evidence of both sides of the argument. Ultimately, it will be up to you and your GP to decide the best course of action. If your GP is uncomfortable with prescribing this drug, then this is his or her decision, as you are now aware of the risks you are asking them to take.

REFERENCES

1. Castellanos, N. P., Bajo, R., Cuesta, P., Villacorta-Atienza, J.A., Paúl, N., Garcia-Prieto, J., del-Pozo, F. & Maestú, F. (2011). Alteration and Reorganization of Functional Networks: A New Perspective in Brain Injury Study. Frontiers in Human Neuroscience, 5, 90. 14 2. Chew, E. & Zafonte, R. D. (2009). Pharmacological management of neurobehavioral disorders following traumatic brain injury—A state-of-the-art review. Journal of Rehabilitation Research & Development, 46, 851-878. 1 3. Clauss, R. P., Guldenpfenning, W. M., Nel, H. W., Sathekge, M. M. & Venkannagari, R. R. (2000). South African Medical Journal, 90, 68-72. 2 4. Clauss et al 2010 3 5. Hall, S., Yamawaki, N., Fisher, A. E., Clauss, R. P., Woodhall, G. L. & Stanford I. M. (2010). GABA(A) alpha-1 subunit mediated desynchronization of elevated low frequency oscillations alleviates specific dysfunction in stroke--a case report. Clinical Neurophysiology, 121, 549-550. 4 6. Larson, E. B. & Zollman, F. S. (2010) The Effect of Sleep Medications on Cognitive Recovery From Traumatic Brain Injury. Head Trauma Rehabilitation, 25, 61-67. 11 7. Nyakale, N. E., Clauss, R. P., Nel, W. & Sathekge, M. (2010) Clinical and brain SPECT scan response to zolpidem in patients after brain damage. Arzneimittelforschung, 60, 177-181. 5 8. Sharan, P., Bharadwaj, R., Grover, S., Padhy, S. K., Kumar, V. & Singh, J. (2007). Dependence syndrome and intoxication delirium associated with zolpidem. The National Medical Journal of India. 20, 180-181. 10 9. Singh, R., McDonald, C., Dawson, K., Lewis, S., Pringle, A., Smith, S. & Pentland, B. (2008) Zolpidem in a minimally conscious state. Brain Injury, 22, 103-106. 6 10. Snyman, N., Egan, J. R., London, K., Howman-Giles, R., Gill, D., Gillis, J. & Scheinberg, A. (2010). Zolpidem for Persistent Vegetative State - A Placebo-Controlled Trial in Pediatrics. Neuropaediatrics, 41, 223-227. 12 11. Vinkers, C. H., Klanker, M., Groenink, L., Korte, S. M., Cook, J. M., Van Linn, M. L., Hopkins, S. C. & Oliver, B. (2009) Disassociating anxiolytic and sedative effects of GABA-Aergic drugs using temperature and locomotor responses to acute stress. Psychopharmacology, 204, 299-311. 7 12. Whyte, J. & Myers, R. (2009) Incidence of Clinically Significant Responses to Zolpidem Among Patients with Disorders of Consciousness: A Preliminary Placebo Controlled Trial. American Journal of Physical Medicine & Rehabilitation, 88, 410-418. 8 13. www.tga.gov.au


Evidence-based treatment Heart attack victims in the 1980s may have been prescribed a drug called encainide to prevent irregular heart beats. The problem was this drug more than doubled the chances of dying from a serious irregular heartbeat in the ten months after a heart attack. To reduce the chances of similar problems, the health industry is increasingly turning toward evidence-based treatment. A evidence-based approach to medicine aims to accurately determine how well a medication will work for as many people as possible, and what side-effects are possible. Ideally these tests will randomised, double-blind, placebo-controlled trials with a wide range of people, which explains why it is costly and time-consuming to get medications on the market. Historically, medicines relied more on patient testimonials, case reports, personal opinions and even deliberate fraud such as the legendary snake oil salesmen in cowboy westerns! What about alternative medicines? The evidence, particularly that behind drug treatments, has improved; but there are still many types of treatments like surgery, physical therapies, natural therapies, dietary advice and counselling, that haven’t been properly tested. This doesn’t mean they won’t useful, at least in some situations. But generally if a new treatment is tested and found to work for the majority of people, with a minimum of side-effects, then it will eventually be established as an evidencebased treatment. What about treatments that seem to work, but haven’t been accepted as evidence-based treatments? This could be due to a number of reasons, including: • the treatment does actually work, but it just hasn’t been proven as yet with sufficient testing • it only works for a small percentage of people • the side-effects outweigh the benefits • it works due to the placebo effect. The placebo effect is a common effect where essentially if someone believes a medicine or treatment will work, it often improves the person’s condition even if the treatment is bogus. It demonstrates the influence the mind can have over our healing process. Nonetheless, an evidence-based approach ensures that any positive effect from a proposed treatment is actually working, and not due to just the placebo effect. An evidence-based approach does not necessarily discourage people from looking at alternatives to western medicine. But it does encourage a healthy scepticism and awareness of the placebo effect, to ensure you aren’t shelling out hard-earned cash on treatments that may only be affecting the way you perceive your condition to be.

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Research on walking

Our ability to walk can be affected by a brain injury, particularly by stroke. Research continues on the most effective rehabilitation strategies to relearn this vital skill. Bruce Dobkin will be presenting a paper on this at the 7th World Congress for NeuroRehabilitation taking place in Melbourne from the 16th to 19th May 2012. Here is the abstract from his paper. The George Burniston Oration: Confounders and Proposed Solutions for Neurorehabilitation Clinical Trials by Bruce H. Dobkin, MD, University of California Los Angeles, Geffen School of Medicine Recent well-designed, randomised clinical trials (RCTs) tested interventions for walking that were based on the translation of stepping mechanisms from animal models, as well as built upon both animal and human studies of task-oriented training, repetitive practice, and activity-induced neuroplasticity. These RCTs of body weight-supported treadmill training (BWSTT) and robotic-assisted step training (RAST) did not, however, produce better outcomes than a comparable dose of progressive over-ground training or exercise in disabled persons with stroke, spinal cord injury, multiple sclerosis, Parkinson’s disease and cerebral palsy. The results are perhaps not surprising, in retrospect, given the limitations of the pre-clinical experiments and clinical pilot studies that antedated the RCTs. The conceptual bases for these promising rehabilitation interventions had once seemed quite plausible, but may have been less fully worked out than the literature suggested. These shortcomings suggest strategies to better assess the conceptual basis, design and outcome measurements for future trials of pharmacological, cortical stimulation, neural repair, and other experimental neurorehabilitation interventions.

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Assessment Planning Service The first step towards care . . . When a loved one’s ability to function on a day-to-day basis becomes impaired, either from disability or age, it can be a distressing time. It is also a sign that it is time to seek the support of a care provider. The first step to accessing care is to arrange an assessment. Synapse provides a range of assessments, including thorough accurate assessments for people needing to access services for the first time. We focus on a person’s wellbeing so an assessment is the best first step you can make toward accessing the right care for your client or loved one. Achieving client wellbeing, quality of life A comprehensive assessment will assist clients and decision makers (guardians/family members/legal council) who work with clients who have acquired a brain injury, other neurological conditions or a disability. Synapse Services can provide thorough assessment and client plans to ensure the best outcomes for the client and enable them to achieve their full potential. A holistic approach identifies their needs, estimates possible costs of care, explaining how costs are likely to change over time,

and identifies the services needed to achieve optimum quality of life. Our approach is very client-centred and it works. We work independently and offer feefor-service assessments, consultation and case management, referrals and behaviour consultancy services Australia-wide. Best outcomes for all We pride ourselves on the fact that we are able to maintain successful and positive long-term relationships with our clients, their families and their allied health professionals. This is essential to achieve the best possible outcome for you and your loved ones. Synapse Services has proudly received a “Reconciliation and Diversity” Award for our assessment and planning work completed as part of the Younger People in Residential Aged Care (YPIRAC). Our team travels extensively around Queensland including regional and remote areas, so rest assured we can come to you. Types of assessments Our case managers can conduct a comprehensive range of assessments to assist clients or their decision makers in ascertaining


$4.5 million for FNQ project

People with disability in the Cairns region of northern Queensland will have better access to communitybased accommodation and respite services through a $60 million Australian Government initiative. The Prime Minister, Julia Gillard and Parliamentary Secretary for Disabilities and Carers, Jan McLucas recently announced that Synapse (formerly the Brain Injury Association of Qld Inc) will receive more than $4.5 million to help build new supported accommodation for local people with disability. “This is fantastic news,” Senator McLucas said. “Local people with disability, their families and carers need a range of supported accommodation models and these new places will help to meet the need.” Chief Executive Officer of Synapse, Jennifer Cullen, welcomed today’s announcement.

their short- and long-term needs, goals and options. Individualised assessments are inclusive, but not limited to: • ADL profile – Activities of daily living over a 24/7 period • FIM – Functional Independent Measure • FAM – Functional Assessment Measure • OBS – Overt Behavioural Scale • IABA – Behavioural Assessment • OHS – Occupational Health and Safety Assessment • Rehabilitation Support • WH&S Assessments • Community Response/referrals Behaviour & planning services Synapse Services also offers a host of activities to provide practical strategies to assist those with complex and challenging behaviour. These include: • Behavioural assessments • Preliminary assessment of skills and functioning • Options planning • Risk assessment • Daily care planning • Client mapping

• Activities for daily living assessment • Workplace health and safety assessment • Occupational health and safety. We provide services direct to the client, on behalf of their families, guardians and/or their legal council. Eligibility/referral Clients able to access our service need to: • be over 18 years of age and under 65 years old (privately funded services are provided to people over 65 years of age) • have a suspected, or be diagnosed with, a neurocognitive disorder and/or Acquired Brain Injury (ABI) • be in receipt of funding (compensable/ governmental) or able to pay privately • have ability to consent to referral or have a relevant decision maker to act. If you would like to discuss a matter or require further clarification don’t hesitate to give us a call. Contact Synapse for more information: • Phone: 07 3137 7400 • Email: assessments@synapse.org.au • Fax: 07 3137 7452 • Website: www.synapse.org.au

“Synapse is proud to be able to deliver the first innovative indigenous model of supported accommodation in the Cairns region,” said Ms Cullen. “Synapse is excited to be part of building a response to community care for people with a disability that joins government, non government and corporate organisations.” The Supported Accommodation Innovation Fund is about encouraging innovation and driving change in the way supported accommodation services are provided. Senator McLucas said the Australian Government wants to see people with disability have access to a range of supported accommodation models that will allow them to participate as valued members of their communities. “A National Disability Insurance Scheme will give certainty to families and many ageing carers who worry about what will happen to their children when they are no longer able to care for the and would include expanding supported accommodation options available to families,” Senator McLucas said. The Supported Accommodation Innovation Fund builds on the Australian Government’s $100 million capital injection in 2008 to build more than 300 supported accommodation places, which are on track to be delivered this year.

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Alzheimer’s disease Alzheimer’s disease is the most common form of dementia. There is no cure for the disease, which worsens as it progresses, and eventually leads to death. It is usually diagnosed in people over 65 years of age but it can occur much earlier in life. The disease develops differently in each person, but there are many common symptoms, the most common initially is difficulty in remembering recent events. Later symptoms can include confusion, irritability and aggression, mood swings, trouble with language, and longterm memory loss. As the sufferer declines they often withdraw from family and society. Gradually, bodily functions are lost, ultimately leading to death. Since the disease is different for each

individual, predicting how it will affect the person is difficult. It develops for an unknown and variable amount of time before becoming fully apparent, and it can progress undiagnosed for years. On average, the life expectancy following diagnosis is approximately seven years. The cause and progression of Alzheimer’s disease are not well understood. Research indicates that the disease is associated with plaques and tangles in the brain. Current treatments only help with the symptoms of the disease. There are no available treatments that stop or reverse the progression of the disease. Because Alzheimer’s disease cannot be cured and is degenerative, the sufferer relies on others for assistance. The role of the main caregiver is

can we reduce our chances of getting alzheimer’s disease? At present, there is no definitive evidence for any particular preventative measure but research indicates some influencing factors that warrant further research: • A Mediterranean diet (fruit, vegetables, cereals, olive oil, fish) appears to have some positive effect • Limited evidence for light to moderate use of alcohol, particularly red wine • Long-term usage of non-steroidal anti-inflammatory drug (NSAIDs) • Curcumin (found in curry) has some effectiveness in preventing brain damage in mice • A study suggests three to five coffees a day at midlife reduced the chances of dementia • Intellectual activities like reading, board games, crosswords and regular social interaction • Learning a second language even later in life seems to delay Alzheimer’s disease • Physical activity is also associated with a reduced risk • Two study suggest medical marijuana may inhibit the progress of Alzheimer’s disease. 29 / B R I D G E M A G A Z I N E

brain injury increases the risk? Research is indicating a link between a brain injury and increase risk of Alzheimer’s disease later in life. A paper presented at the Alzheimer’s Association International Conference in Paris last year found more than a two-fold increase for older veterans. As with so many aspects of this disease, more research is needed to accurately establish how, and to what extent, a brain injury increases the risk of Alzheimer’s disease. often taken by the spouse or a close relative. The caring role can be a heavy burden on the social, psychological, physical, and economic elements of the caregiver’s life. In developed countries, Alzheimer’s disease is one of the most costly diseases to society, and it will probably worsen with the ageing of society. The costs include nursing home care, direct nonmedical costs such as in-home day care, lost productivity of both patient and caregiver, long-term care by health care professionals and particularly institutionalisation. So effective treatments or cures will have dramatic effects economically, apart from reducing the suffering involved. Reproduced under the GNU Free Licence Agreement from pages on Wikipedia at en.wikipedia.org


Huntington’s disease

Use it or lose it

Microscope image of neurons (yellow) with nuclear inclusions (orange), which occur as part of the disease process Huntington’s disease (HD) is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia. It typically becomes noticeable in middle age. HD is the most common genetic cause of abnormal involuntary writhing movements called chorea (the disease used to be called Huntington’s chorea). It is much more common in people of Western European descent than in those of Asian or African ancestry. The disease is caused by an autosomal dominant mutation on either of an individual’s two copies of a gene called Huntingtin, which means any child of an affected parent has a 50% risk of inheriting the disease. In the rare situations where both parents have an affected copy, the risk increases to 75%, and when either parent has two affected copies, the risk is 100% (all children will be affected). Symptoms of Huntington’s disease Physical symptoms of Huntington’s disease can begin at any age from infancy to old age, but usually begin between 35 and 44 years of age. About 6% of cases start before the age of 21 years with an akinetic-rigid syndrome; they progress faster and vary slightly. The variant is classified as juvenile, akinetic-rigid or Westphal variant HD. The Huntingtin gene normally provides the genetic information for a protein that is also called “Huntingtin”. The mutation of the Huntingtin gene codes for a different form of the protein, whose presence results in gradual damage to specific areas of the brain. The exact way this happens is not fully understood. Genetic testing Genetic testing can be performed at any stage of development, even before the onset of symptoms. This fact raises several ethical debates: at what age is an individual considered mature enough to choose testing, do parents have the right to have their children tested, and managing confidentiality and disclosure of test

results. Genetic counselling has developed to inform and aid individuals considering genetic testing, and has become a model for other genetically dominant diseases. Symptoms of the disease can vary between individuals and among affected members of the same family, but the symptoms progress predictably for most individuals. The earliest symptoms are a general lack of coordination and an unsteady gait. As the disease advances, uncoordinated, jerky body movements become more apparent, along with a decline in mental abilities and behavioral and psychiatric problems. Physical abilities are gradually impeded until coordinated movement becomes very difficult. Mental abilities generally decline into dementia. Complications such as pneumonia, heart disease, and physical injury from falls reduce life expectancy to around twenty years after symptoms begin. There is no cure for HD, and full-time care is required in the later stages of the disease. Emerging treatments can relieve some of its symptoms. Research into Huntington’s disease Self-help support organisations, first founded in the 1960s and increasing in number, have been working to increase public awareness, to provide support for individuals and their families, and to promote research. The Hereditary Disease Foundation, a research group born out of the first support organization, was instrumental in finding the gene in 1993. Since that time, many new research discoveries have been made and understanding of the disease is improving. Current research directions include determining the exact mechanism of the disease, improving animal models to expedite research, clinical trials of pharmaceuticals to treat symptoms or slow the progression of the disease, and studying procedures such as stem cell therapy with the goal of repairing damage caused by the disease.

Mechanics of Learning – lessons from neurorehabilitation “Use it or lose it” – is a particularly apt description of brain function. Continuously (until death) new connections are formed between the 100 billion nerve cells with which we have been born, and the 100 to 10 000 connections per neuron with others forming extensive networks makes the brain an enormously complex organ. Probably some neuro-neogenesis (perhaps 6000 cells a day) occurs even in adulthood. Only those synapses, however, which are actively used remain functional. This is the basis of learning – the interaction and exchange between organism and environment in problem-solving tasks of daily living. Investigations on neuroplasticity in recent years have become a central topic in neuroscience, and have changed the attitude towards patients with lesions of the central nervous system. They also have led to a better understanding of the adaptations of structures and functions of the brain according to requirements from the environment (environment being understood as the physical, psychological and social surroundings with their potentials and constraints). In neurorehabilitation, such understanding of the interactions between organism and environment and the of learning is used and adapted in the treatment of patients with acute or chronic diseases or trauma. In reverse the observation of the changes obtained during rehabilitation of such patients provides new insights into the mechanisms of learning and of adaptations of brain structures and functions. by Prof. Jürg Kesselring, Department of Neurology & Neurorehabilitation, Switzerland

Text and image reproduced under the GNU Free Licence Agreement from pages on Wikipedia at en.wikipedia.org

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006 - Bridge Magazine - Neurocognitive Disorders (2012)  

On changing terms from acquired brain injury to neurocognitive disorders

006 - Bridge Magazine - Neurocognitive Disorders (2012)  

On changing terms from acquired brain injury to neurocognitive disorders