016 - Bridge Magazine - Healthier You - 2014

VOL-16

Healthier You Issue 1 / BRIDGE MAGAZINE

Food for thought Eat your way to recovery

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BRIDGE VOLUME 16 - August 2014 ISSN 1448-9856 General Editor: Contributing editors:

National Development Manager:

Barry Morris Alice Corcoran Jessica Irons Glen Farlow

Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: info@synapse.org.au W: http://synapse.org.au

Lifetime tsunamis How families can rally behind a loved one with a Brain Injury

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Bridge is produced by Synapse (trading name for the Brain Injury Association of Queensland).

Published quarterly, it welcomes contributions and news items, especially from members.

Advertising rates are available on request.

Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.

VISUAL DIFFICULTIES: Visit www.synapse.org.au and view the free online version which can be expanded on screen.

DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. Synapse will not be held responsible for any injuries or damages that arise from following the information provided.

Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse.

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Because I can Exercise is an essential part of recovering from a Brain Injury

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INDEX

03 Brain drain

The many ways an injury affects the brain

05 Food for thought

Good eating for your brain

07 Pandora’s box

Human rights & Indigenous children

09 Lifetime tsunamis

Supported loved ones during recovery

11 To drink or not to drink?

Brain injuries, alcohol & other drugs

13 My family journey

An inspiring personal story

14 Supporting young people

Support for young Aussies from headspace

15 Because I can

Rick Bowie on exercise & recovery

17 Parenting from a spaceship

Motherhood – even tougher in a wheelchair

19 Neurofeedback

Is there any basis to all the hype?

21 The selfie-less wall

A new BANGONABEANIE initiative

22 Homeless Indigenous Australians

Disturbing news from Dr Clare Townsend

23 Discrimination & invisible disabilities

Gerowyn Hanson is mad as hell

25 Managing medications

Practical tips for safe pill popping

27 Stepping it up with ICare

A new way to learn to walk again

29 Understanding and managing stress

Practical coping strategies

30 Positive behaviour support

A great approach to challenging behaviours

bridging THE GAP Jennifer Cullen, CEO of Synapse

Prevention is better than cure With experience comes wisdom… hence the survival of the old adage, “prevention is better than cure.” Of course prevention is better, but often we don’t take the time to look after ourselves. If we get the flu, our doctor might prescribe some antibiotics, and give or take a few days we’re back to normal.

Why is the brain any different?

Unlike a virus or a broken arm, the brain does not heal in the same way… we cannot simply take a few pills or immobilise a joint to fast-track recovery. Indeed, we are still learning about the intricacies of how the brain works holistically, let alone a comprehensive understanding of how it heals. Here’s what we do know…

You may never be the same person again.

The brain is made of delicate nerves (unlike muscle or bone), and as such it does not readily repair itself. Because the brain controls all of the functions within the body, including (but not limited to) personality, memory, physical movement and language, one small injury can

dramatically alter a person’s experience for the rest of their life.

Compared to long term illness such as obesity, lung cancer or osteoporosis, Brain Injury can happen in a split second; a car accident, a fall… one punch. There may be no time to reassess your life decisions, give up a bad habit, or tell a loved one what they really meant to you.

So why prevention?

Education is the key to making informed decisions. In the same way that you prepare for your future through work experience or academia, learning about ways to look after yourself may not just save you from injury, but it may also save your family from a lifetime of heartache.

Brain injury is often called the “Invisible Disability” because it isn’t always visible that someone may have ongoing issues. As such, it can be incredibly difficult for your family, friends, or even doctors and medical staff to understand that you even have a disability, let alone treat it.

The reality is, over 1.6 million Australians are affected by Brain Injury, but you can make a real difference to someone’s life.

BANGONABEANIE is the National campaign for Brain Injury Awareness Week, seeking to make the Invisible Disability into a very visible one.

WHY GIVE A DAMN??

BECAUSE buying just one beanie will help improve the level of support to families. In turn you will also be showing the 1 in 12 Australians with a Brain Injury they are not alone.

BECAUSE all money raised through BANGONABEANIE goes towards providing services for people with Brain Injury, helping improve their quality of life.

From all of us at Synapse, take care of yourselves, your family and friends… get involved during awareness week and help us to support Australian families living with Brain Injury.

Jennifer Cullen CEO of Synapse

AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS QLD QLD QLD AUS NSW VIC TAS WA SA NT

Synapse ABIOS (Acquired Brain Injury Outreach Service) Headway Gold Coast Brain Injury Australia Brain Injury Association of NSW BrainLink Services Brain Injury Association of Tasmania Headwest Brain Injury Network of South Australia Somerville Community Services

T: 07 3137 7400 T: 07 3406 2311 T: 07 5574 4311 T: 1 800 BRAIN1 T: 02 9868 5261 T: 03 9845 2950 T: 03 6278 7299 T: 08 9330 6370 T: 08 8217 7600 T: 08 8920 4100

E: info@synapse.org.au E: abios@health.qld.gov.au E: admin@headwaygoldcoast.org E: admin@braininjuryaustralia.org.au E: mail@biansw.org.au E: admin@brainlink.org.au E: enquiries@biat.org.au E: admin@headwest.asn.au E: info@binsa.org E: scs@somerville.org.au

www.synapse.org.au ww.health.qld.gov.au/abios www.headwaygoldcoast.org www.braininjuryaustralia.org.au www.biansw.org.au www.brainlink.org.au www.biat.org.au www.headwest.asn.au www.binsa.org www.somerville.org.au 2 / BRIDGE MAGAZINE

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Brain drain An overview of some of the main difficulties that can affect people after Brain Injury All Brain Injuries are different and people may be affected to a varying degree by any number of these problems depending on the severity of their injury and the area of the brain which is affected.

We have grouped the main effects of Brain Injury into three areas: Physical – affecting how the body works Cognitive – affecting how the person thinks, learns and remembers Emotional and behavioural – affecting how the person feels and acts PHYSICAL EFFECTS Fatigue Excessive tiredness is common to all severities of Brain Injury, including mild injuries. Tasks that we take for granted, such as getting dressed or walking around can require much more 3 / BRIDGE MAGAZINE

effort after Brain Injury. It is important to allow for rest periods at regular intervals during the day, and not to feel that everything has to be done at once.

Mobility Movement can become very slow and balance can be affected. Indeed, having a Brain Injury can sometimes feel like ‘living life in the slow lane’. Some people may need a wheelchair or other mobility aids, because their poor balance and co-ordination means they cannot walk without support. The fact that they use a wheelchair does not necessarily mean that the person cannot stand or walk for short distances.

Sensory impairment Sensation of touch on the skin may be reduced, lost or exaggerated. It may also be difficult for the person to know where their

limbs are positioned without looking at them.

Eyesight may be affected and this may not be correctable with glasses. Odd postures or walking patterns may also be explained by sensory impairments. Taste or sense of smell may be impaired or lost, either in the short or long term.

Difficulties with speech Slow, indistinct or rapid speech is common after a Brain Injury. It may be hard to understand the person’s speech at first, but the listener may learn to ‘tune in’. Some people may repeat what they have said many times over: this is known as perseveration. Some people may lose the ability to speak altogether. Remember, their inability to express themselves does not mean that they have lost their intelligence.

Epilepsy Brain injury can make a person prone to epileptic seizures or ‘fits’. Many people who have had a seizure after a Brain Injury are given a drug for a number of years to reduce the chance of it recurring. The drug may have an overall ‘dampening’ effect on the person’s level of arousal, and therefore on the performance of everyday tasks. Remember the added effect that this could have if the person already has excessive fatigue. It is important to remember that a person who suffers from seizures may not be allowed to drive and should contact the relevant authorities for advice.

Spasticity Limbs may be stiff or weak, and the range of movement limited. Often one side of the body is affected more than the other, depending on the area of brain that is damaged. This is known as hemiplegia. Spasticity may cause pain or discomfort. If this occurs it is advisable to seek help from a GP, who may be able to prescribe drugs to reduce muscle spasms.

Weakness or paralysis often affects one side of the body more than the other. This could mean that help is needed during personal care and when getting dressed or undressed.

Muscle weakness may affect continence, and continence aids may be needed.

Ataxia This is irregular, uncontrolled movement or tremor affecting the co-ordination of movements. The person’s hands may be shaky or clumsy, and handwriting may be difficult or impossible.

Hormonal imbalances Brain injury may cause damage to the hypothalamus and/or pituitary gland, which are small structures at the base of the brain responsible for regulating the body’s hormones.

Damage to these areas can lead to insufficient or increased release of one or more hormones, which causes disruption of the body’s ability to maintain a stable internal environment (homeostasis). If damage to the pituitary gland leads to a reduction in hormone production the resulting condition is known as hypopituitarism.

Another hormonal condition which can be caused by Brain Injury is neurogenic diabetes insipidus, which is usually a short-term problem in the acute stage after injury but can occasionally persist in the long-term.

COGNITIVE EFFECTS Memory Problems with memory, particularly shortterm memory, are common after Brain Injury.

Some people may be unable to remember faces or names, or what they have read or what has been said to them. New learning may be affected, whilst previously learned skills may still be intact.

Motivation Reduced initiation and problems with motivation. Problems with getting started on tasks are common, and can often be mistaken for laziness. These problems may also be a symptom of depression.

Reduced concentration span This is very common and can also impact on memory problems. Completing tasks can be a problem and the task may be abandoned before reaching the end. The person may initially appear eager to start a task, but then lose interest very quickly.

Slower information processing People can take longer to think things through or work out what has been said to them. ‘Information overload’ can be quickly reached, and can cause frustration and anger.

Reduced problem-solving ability It may be difficult for the person to work out what to do if they encounter an unexpected problem.

Repetition or ‘perseveration’ The person may be unable to move on to another topic in the same conversation, and they may return to the same topic over and over again. They may also repeat the same action, appearing unable to break the cycle.

Reasoning, judgement & insight Impaired reasoning may affect a person’s ability to think logically, to understand rules, or follow discussions. The person may easily become argumentative due to lack of understanding.

Impaired judgement can cause difficulties in accurately perceiving and interpreting one’s own and other people’s behaviour and feelings.

Putting oneself ‘in someone else’s shoes’ can be almost impossible.

Lack of insight means the person may have an unrealistic view of themselves and others, and may not appreciate that they have certain problems. This may lead to unattainable goals being set, which then leads to failure and frustration.

Language loss (aphasia) This may be ‘receptive’ (difficulty making sense of what is said or read) or ‘expressive’ (difficulty finding the right words to say or write), or both. This can be very frustrating for the person and for others, and patience is needed on both sides.

Remember – just because a person cannot express themselves, does not mean they do not need or want to be heard.

Impaired visual-perceptual skills The person may have difficulty making sense out of ordinary pictures and shapes, finding the way around a building, or drawing or constructing objects. These problems can

be particularly frustrating for a person who is quite competent in their language and social skills. Occasionally, people may fail to respond to stimuli coming from one side of their visual field, or may ignore a particular side of their body, for example when shaving or dressing.

This condition is known as visual neglect.

EMOTIONAL & BEHAVIOURAL EFFECTS Loss of confidence This is very common after Brain Injury and a person can need a lot of encouragement and reassurance.

Mood swings or ‘emotional lability’ The person may have a tendency to laugh or cry very easily, and to move from one emotional state to another quite suddenly.

Depression and sense of loss are common.

Depression may be caused by injury to the areas of the brain that control emotion, but can also be associated with the person gaining an insight into the other effects of their injury. After Brain Injury, many things that are precious to the individual may be lost forever and there may be much sadness, anger, guilt and confusion, surrounding this.

Anxiety & frustration Anxiety can be another consequence of Brain Injury. Life has been changed forever in a matter of seconds, and the future can look frightening.

Anxiety can quickly lead to frustration and anger and needs to be identified and alleviated as early as possible.

Frustration can build up quickly, especially when things that were once so easy are now difficult or impossible. The resulting anger may be very difficult for the person to control.

Abusive or obscene language may be used. This may be spontaneous and uncontrollable, and may be an outlet for the person’s anger and frustration. This behaviour can obviously be embarrassing and upsetting for those nearby.

Disinhibition There may be a loss of control over social behaviour, so that the person may behave in an over-familiar manner or may make sexual advances with the wrong people at the wrong time. They may also be unable to inhibit what they are thinking and may make inappropriate and offensive outbursts.

Impulsivity A person with a Brain Injury may tend to speak or act without thinking things through properly first.

Obsessive behaviour can occur. For example, a person may be afraid that their possessions will be stolen, and may check their belongings repeatedly.

This article is reproduced from www.headway.org.uk with the permission of Headway - the Brain Injury association.

You can send an email to helpline@headway.org.uk to discuss any issues raised. Visit the website for great resources available for free download.

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Food for thought

Tips on eating to avoid strokes and maximise our health Eating well and a healthy lifestyle play key roles in helping your brain to recover after an injury, and minimise the chances of further injury too.

Stroke, lifestyle & other Brain Injuries Every ten minutes, an Australian suffers a stroke. With this comes not only the illness and hospitalisation that stroke brings, but also devastating fallout for the patient’s friends and family. Spouses become carers, finances are stretched, and plans for the future can become unravelled. However, there are many things that can be done to prevent strokes. Evidence shows that there are some dietary and lifestyle factors that can prevent stroke from occurring; or for stroke patients, reduce the risk of it happening again. Some of those factors include: • making proactive dietary changes • controlling blood pressure • reducing body weight if overweight • exercise • proactive nutrients such as fish oil.

Avoid processed foods Take the advice of Michael Pollan, “Eat food.

Not too much. Mostly plants.” This means eating foods as close to nature as possible. Just as our bodies are designed to exercise like a hunter-gatherer, they are also made to eat food as close to the natural source as possible. For example, choose whole grains / wholemeal

breads rather than white, eat plenty of fruits and vegetables, avocado, legumes, and nuts and seeds. Eat lean meats in moderation (a quarter of your main meal) rather than the main part of the dish. Plant sources of protein such as legumes (baked beans, chick peas, lentils etc), as well as nuts and seeds are full of healthpromoting nutrients. Fill half of the plate with vegetables or salad when preparing your main meal for the day.

Don’t eat too much The idea of not eating too much? Children are born with an innate ability to eat when they are hungry, and stop eating when they are full.

Somewhere along the line we learn to ignore these messages from our body and eat too much, too often, particularly when something tastes good. Combine this with the refined Western diet full of added fats, sugars, salt and artificial flavours, and it is little wonder we have trouble keeping our weight under control. Trust your body to know how much food it needs, and when you start feeling full, put down your fork and keep the rest as leftovers.

Focus on these factors rather than counting grams of fat or calories, and your body (and mind) will thank you. Aim to fill the bulk of your diet with the above foods, and eat only small amounts of processed foods, refined (white) grains and breads, added sugars, and sweet drinks.

Some easy ways to help you achieve this: • Use bags of salad leaves / pre-chopped or frozen vegetables • Add canned legumes to meals (cheap too) • Keep a supply of easy to eat, portable fruit (e.g. grapes, bananas, apples, mandarins, strawberries) • Exchange refined cereal or processed snacks for nuts, fresh or dried fruit, and a cup of milk or yoghurt.

Fish oil Years ago scientists discovered that groups such as the Eskimos had a very low risk of heart disease and stroke despite eating plenty of dietary fats. Their secret? Omega-3 fatty acids – the type of fat contained in oily fish such as salmon, tuna, sardines and mackerel. These fats make blood vessel walls more elastic and less likely to develop vessel disease leading to stroke.

Aim to eat fish two to three times per week, particularly the oily fish listed above. If you can’t manage this, fish oil supplements are also effective – be sure to check with your pharmacist, dietitian or doctor regarding the dose that is right for you, taking into account your medical history.

Monitor blood pressure High blood pressure (hypertension) increases the risk of stroke. It is known as “the silent killer” as often people are not aware that their

“Eat food. Not too much. Mostly plants.”

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blood pressure is at a dangerous level. One third of adult Australians have high blood pressure.

It is important (and painless) to monitor your blood pressure, and if it is high, talk to your doctor about how to manage it. Free blood pressure checks are available at pharmacies, or ask your GP. Lifestyle factors also affect hypertension – reducing salt in your diet, and losing excess weight help lower blood pressure.

If overweight, reduce body weight Over half of the Australian population are overweight or obese. This can increase the risk of high blood pressure, stroke, and cardiovascular diseases. If you find it difficult to lose weight on your own, you are not alone!

Weight change means changing long-term habits, which is hard, and often requires seeking help. Talk to someone about why it is difficult to maintain healthy eating, exercise, or a safe alcohol intake. Psychologists, life coaches, and dietitians can examine your habits and gradually change towards healthier alternatives. These professionals are often available at low or no cost through Medicare if referred by your GP. The good news is, even modest changes to weight can mean a lower health risk. Focus on small but positive changes to your lifestyle, and aim to sustain them over the long term.

Exercise This is one area where history is interesting.

Consider the case of human beings – ten thousand years ago we were hunter-gatherers, exercising for an average of 2.5 hours per day.

Our bodies are evolved to require this exercise for health, but we now have lifestyles that keep us relatively sedentary.

While it is unrealistic to suggest that we all adopt a foraging lifestyle, we do need to accept that our bodies need exercise to be healthy. Aim for 30 minutes per day, broken into segments if that is more achievable.

Try to add five minutes of movement to your day, such as using the stairs instead of the lift, gardening, kicking the ball with your kids, and strolling for 10 minutes during your lunch break. Daily exercise achieved! The American Heart Association suggests that for each hour of regular exercise you get, you’ll gain about two hours of additional life expectancy, even if you don’t start until middle age. Check with your doctor before embarking on an exercise program.

Reduce your risk of stroke by choosing just a couple of small changes that are achievable.

Once these changes become habitual, feeling healthier will become the reward that helps to motivate a healthier lifestyle.

Lisa Mahoney Dietitian, APD BHealthSci (Nutrition and Dietetics) Community Rehabilitation Program & Robina Hospital Gold Coast Health Service District

Signs of a stroke – FAST How do you know if someone is having a stroke? Think… F.A.S.T. – an easy way to remember the most common signs of stroke by asking these simple questions: Face

Check their face. Has their mouth drooped?

Arm

Can they lift both arms?

Speech

Is their speech slurred? Do they understand you?

Time

Is critical. If you see any of these signs call 000 straight away.

A stroke is always a medical emergency. Recognise the signs of stroke call 000.

HOW DOES YOUR DIET RATE? Despite billions spent on fad diets and weight loss programs, the best long-term solution is exercise and eating from the traditional five food groups.

Vegetables, legumes A good source of vitamins, minerals, dietary fibre and carbohydrates, they are usually cheap, especially when they are in season. They are still nutritious even if you buy them frozen or canned.

Fruit Fruit is a rich source of vitamins, including vitamin C and folate. Fruit also provides carbohydrates, in particular natural sugars and fibre, especially in the edible skins. Dietary fibre helps prevent and manage conditions such as being overweight, bowel cancer, haemorrhoids, diabetes and high blood cholesterol.

Bread, cereals, rice, pasta, noodles Fibre, vitamins and minerals, carbohydrates and protein — all great stuff for energy, growth and repair of the body. Try eating whole grain bread, high fibre cereal, brown rice and wholemeal pasta.

Don’t rely on just bread and breakfast cereal – get into rice, pasta and noodles, as they have less salt.

Meat, fish, poultry, eggs, nuts, legumes You don’t need a lot of meat, and get lean cuts when possible. Iron helps your body carry oxygen in the blood, and zinc is great for healing of wounds, growth and reproduction.

Get your omega-3 fatty acids from salmon, herring, mackerel, anchovies, sardines and tuna.

Vegetarian? Boost your intake of legumes, nuts and seeds.

Dairy products Milk, cheese and yoghurt are excellent sources of calcium. Try to avoid all the sugar and fat that can be present in some yoghurts and milk drinks.

Women, and girls especially, need calcium to protect against osteoporosis. These foods are also a good source of protein, riboflavin and vitamin B12.

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Pandora’s box The human rights of Australia’s Indigenous children – how do we open the box?

The human rights of Australia’s children is enshrined in legislation but appears to have limited application in reality. The health and wellbeing of many Australian children has been affected by exposure to teratogens – substances that affect development during pregnancy. This is especially true for children marginalised by their social and racial membership, and Indigenous children and their families occupy the unhappy position as the most marginalised Australian population with the poorest health outcomes and neglect of basic human rights.

Many Indigenous communities are situated outside cities so the chances of identifying children affected by teratogens like alcohol during pregnancy is much less likely.

Recent research has increased our knowledge of substances that affect brain development in the womb, but this information has often not been passed on to potential parents. The practical reality is that there are inevitable delays in research in establishing links between fetal exposures and later life outcomes.

On a national level, the impact of substance use on children’s development is not attracting

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the attention it deserves, given the worrying rates of illiteracy, behavioural disorders, low school achievement, vandalism and early criminal offending.

For those without access to knowledge of causal factors, a ‘blame the victim’ culture has developed. Certain families then are ostracised, which confirms their status in society and ensures they remain there.

Commonly known teratogens include legal drugs such as tobacco, alcohol and thalidomide, and illegal drugs such as marijuana and cocaine.

Certain herbicides and toluene (in solvents like glue and paint) are also teratogens.

Tobacco The most widely used legal teratogen in Australia is tobacco. While smoking has declined in the general population, Indigenous levels of smoking are twice as high at 54% and in some Indigenous communities as high as 80%. Rates of low birth weight, pre-term births and failure to thrive in the early years remain significantly higher for Indigenous children.

The earlier young people start to smoke, the greater the possibility that nicotine can create changes to the structure of their still developing

brain. In 2002, the Queensland Cancer Fund called on the Queensland Government to urgently educate parents about the effects of passive smoking on children.

While the more obvious birth deformities will usually be detected early, the insidious effects such as behavioural disorders are usually ignored or considered too difficult for meaningful intervention.

Alcohol The disorders within the Fetal Alcohol spectrum are said to be the most common causes of preventable birth defects in the USA, including mental retardation, growth retardation and development faults in major organs (Centre for Disease Control and Prevention, accessed, 2003).

Until recently the likelihood of children being born with alcohol-related birth disabilities has been totally ignored in Australia. In 2000 the medico mother of an adopted 12 year-old Indigenous boy told me the closest diagnostic unit to Brisbane was in Seattle, USA! Today there is screening and assessment for children who may have been exposed to alcohol in the womb, but Australian health authorities have

MAJOR POINTS OF CONCERN Janet Hamill made a submission to the Productivity Commission’s Inquiry into the Disability Discrimination Act in May 2003, raising the following concerns: • • • • • • • • •

Exposure to teratogens is overlooked in Indigenous communities There are possibly many children with behavioural problems due to parental use of teratogens There are no cross-disciplinary teams to assess neurodevelopment birth injuries Indigenous children with learning disabilities are labelled ‘bad kids’, then caught up in a profound cycle of victim blaming, resulting in their own cycle of using addictive substances There are no considerations of behaviour problems until contact with the criminal justice system Neurodevelopment birth injuries probably account for the majority of prison populations Although other countries, such as Canada, have protocols for children with alcohol-related birth injuries, no such protocols are in place in Australia If diagnosed with a learning disability (related to their exposure to teratogens) in rural Queensland, little or no recognition is given and even less assistance is available The implosion of Indigenous communities can be halted through purposeful and thoughtful evidence-based services and interventions – no child should be excluded or left behind.

no data to indicate prevalence rates, and there are no management strategies across the various service agencies.

There are also issues of political sensitivity.

For example, Australia’s wine producers have no warnings on alcohol labels to alert women to the dangers of drinking when pregnant, although exported wines usually have to comply with overseas standards in this regard.

Children exposed to drugs like alcohol and marijuana face a range of effects. When entering school, they are at an increased risk of challenging behaviours, attention and cognitive deficits, learning disabilities, language problems and possibly poor impulse control. These issues often bring them into contact with the law.

A cocktail of teratogens Australian authorities, well aware of the climbing costs of juvenile and adult crime, still ignore what could be the more obvious causes of young people offending. Why are prisons getting bigger and early life-course interventions thin on the ground? Is the apathy related to race? Too often we hear that Indigenous families must take responsibility for the behaviour of their children but clearly there are unidentified factors at play.

Our Western culture presumes selfresponsibility but mitigating factors such as brain disorders must be understood and treated or our prisons will simply keep getting bigger.

Imagine the implications for a child who has

been exposed to more than one teratogen? We may be able to guess the real cost to Australia of alcohol use, but if we add the cost of teratogens such as tobacco, marijuana and inhalants, a better understanding of the urgency for action would be very obvious.

Pandora’s box How do we open the box? How can justice be gained for those overlooked in the equity stakes?

Without intervention, Indigenous children and their families will continue to be isolated and marginalised. Why the slow response to their plight even when notable Australians such as Professor Fiona Stanley and Sir William Deane speak out publicly about the problem as being based in racism? Is there no shame in being called to task?

It is distressing for those of us working with families struggling to survive when the future holds more of the same. Each week brings another funeral for someone taken to their grave prematurely because society has isolated and neglected their interests.

The existence and availability of protocols used internationally demonstrates institutional discrimination by our government. To be fair and humane, we must give Indigenous children an equal start in life and this can only happen through regeneration of entire communities.

Australian authorities have an opportunity to showcase to the world that we can do as well socially as we have done athletically.

FASD, pregnancy & binge drinking While binge drinking among young women has gained a lot of media attention, there has been less attention given to the risks during pregnancy. It can be some time before a pregnancy is confirmed, and there is a growing realisation that the unborn child can be unknowingly affected by binge drinking in the early stages of pregnancy.

Fetal alcohol spectrum disorder (FASD) is a group of conditions that can occur when a mother drank alcohol during pregnancy. Symptoms include low birth weight, distinctive facial features, heart defects, behavioural problems and intellectual disability.

FASD exacts a heavy cost on society in terms of social services, hospital bills, court fees, prison expenses and often lifelong support for those affected.

During pregnancy, alcohol crosses from the mother to the baby via the plancenta, killing the cells that will form the baby’s brain, organs and central nervous system. Cognitive symptoms for children include memory lapses, learning disabilities and a range of behavioral problems, including dangerous impulsivity.

Acquired Brain Injury is often called the invisible disability, and this is especially the case with FASD – most children and especially adults with an alcoholrelated birth defect will never be diagnosed.

Australia’s first comprehensive study of the impact of excessive drinking on unborn Aboriginal children revealed devastating rates of intellectual disability.

The 2011 study, conducted by the Lililwan Project in Western Australia’s Kimberley region, found that half of babies there are born with disabilities from fetal alcohol spectrum disorder.

ABOUT THE AUTHOR – DR JANET HAMILL Dr Janet Hammill is a Research Fellow at the Centre for Public Health at the University of Queensland.

Dr Janet Hammill, an Indigenous ethnographer and acclaimed participatory action researcher, was funded by the NHMRC for both her PhD and an Indigenous Capacity Building Grant. Weaving narratives of Indigenous family histories into a biological framework has illustrated the intergenerational inheritance, epigenetic factors and resulting neurodevelopmental burdens underpinning the plethora of disadvantage demonstrated across all statistical data of health, education and poor life outcomes generally.

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Life time tsunamis Supporting a loved one after a Brain Injury

Stress: It’s a part of all of our lives. Many of us struggle to cope with the daily stressors of traffic jams, minor arguments, or misplacing the car keys. Sometimes a big life event, such as marriage, the birth of a child, or a change of job can add significant stress on top of the everyday hassles that we all experience. So how do we begin to cope when something truly catastrophic occurs?

Many Australians, particularly those who have become caregivers for a family member recovering from a Brain Injury, routinely grapple with this question. Dr. Peter Stebbins is a clinical psychologist who has devoted much of his career to the adjustment and coping of caregivers for people with a Brain Injury.

“In my early research, I was always very interested in how people respond to the most challenging life events, and one of the most challenging life events known in the area of 9 / BRIDGE MAGAZINE

disability and rehabilitation is becoming a caregiver of someone who has a Brain Injury,” says Dr. Pete. “Research has shown that this particular caregiving role is the most stressful when compared to caregivers of people with physical disabilities, dementia and other intellectual disabilities.”

“Over the years, I’ve become passionate about trying to communicate simply and clearly the practical strategies from a behavioural medicine perspective for coping with stressful life events that these caregivers need to know.”

The waves of life His practice and research led to the development of the “Waves of Life” model.

“In this model,” says Dr. Pete, “we talk about stressful life events in terms of different-sized waves. There are the regular waves of life or daily hassles; big waves of life or disruptive events; and then the tsunamis, which are exactly

like the real thing – devastating waves that absolutely wipe us out!”

Taking on a caregiving role for a person with a Brain Injury is one of these tsunamis in life.

There are many things that are not dissimilar to caregiver challenges, such as the death of a family member – both of which involve grief and loss. Dr. Pete believes that seven of the predicted ten tsunamis in a lifetime will occur during midlife, with an average age of occurrence between ages 43 and 53.

“What began many years ago in clinical research with caregivers has evolved into a more simplified education program to help people manage those tsunamis in life and learn how to prevent wipeouts, or major episodes of stress, depression or anxiety” he says.

Adjustment & coping Why is caregiver adjustment and coping such an important topic? Dr. Pete explains that one

In addition to these challenges, Dr. Pete describes caring for someone with a Brain Injury as a “socially devalued role,” as opposed to the caregiving role of a parent, a role typically celebrated within our society. Caring for someone with a Brain Injury also often monopolises the care giver’s time so self-care is pushed aside.

Changes in cognition, personality, mood and behaviour form the uniquely challenging aspects of caring for a person with a Brain Injury. Dr Pete realised in his early years working in respite care that it often wasn’t the severity of the disability but the behavioural challenges that were causing the most distress for caregivers.

He tells the story of two parents with whom he worked, each with a child with a Brain Injury. “In some cases, cognition and physical ability can be relatively intact but mood and behaviour are very volatile, which can be extremely distressing for caregivers. Contrast this with someone who has severe cognitive and physical limitations but stable mood and behaviour, and often these are not the caregivers who are most distressed.”

of the most powerful predictors of how a person adjusts to a Brain Injury is how the person’s caregivers cope.

“It’s quite logical when you consider that, for any one of us who has been a parent, when we’re fresh and on top of things, we can manage our children better,” says Dr. Pete. “In my research I have looked at caregiver coping across a range of disabilities and found that when the caregiver wasn’t coping, the person with the injury or disability was significantly compromised.”

Furthermore, Dr. Pete suggests that caring for someone with a Brain Injury is a particularly challenging role, and specific difficulties can be traced to cognitive and personality changes before the Brain Injury. The person with the Brain Injury often looks the same but these other changes are the core issues that cause major difficulties for caregivers.

Four keys to inner wellbeing Dr. Pete’s approach emphasises four keys to inner wellbeing: • Mindset • Emotions • Lifestyle • Purpose.

It is these four elements that form the strategies that caregivers can use to cope with the many challenges they face.

While the children in these two families differed in terms of the effects of their Brain Injuries, Dr. Pete says it was the marked contrast in mindset that made a difference in outcomes between the families for both caregiver and child. One caregiver had a mindset of Worry and Demand, while the other was Encouraging and Accepting.

The second element is emotions. Selfawareness, the development of coping strategies, and the use of relaxation techniques all play a role in the management of emotions. “The only thing we can change as caregivers is ourselves,” he says. “Focusing on the things we can change and problem-solving is an important part of handling emotions so that they do not become overwhelming.”

The third key is lifestyle. This element includes keeping a balanced diet, exercising regularly, and getting sufficient sleep. Lifestyle is the often first thing to be compromised when people become overwhelmed with the responsibilities and demands of a caregiver role. However, it is during these times that it is all the more important to ensure that we maintain our health routines. Other important

components of lifestyle are social activities, hobbies and interests, through which caregivers can replenish their wellbeing and increase the ability to effectively cope with future demands.

The final element of inner wellbeing is purpose. Dr. Pete suggests that having a sense of direction or mission in life is imperative.

Often, taking on a caregiving role occurs in the context of previous life directions becoming derailed. It is important to take time to revisit one’s purpose and life goals in order to develop new directions that allow you to continue to live according to your values.

A support team Dr. Pete suggests that having a stable support team is essential, and believes a clinical neuropsychologist can play a vital role in caregiver adjustment. “On the psychological side, a clinical neuropsychologist is familiar with the four elements of wellbeing and strategies to assist with coping,” says Dr. Pete.

“On the neurological side, he or she will have the ability to understand how the neurological changes in the person with a Brain Injury will affect cognition, behaviour and personality.”

Dr. Pete says that it is critical to be proactive.

“Set up the relationship and lay out the expectations,” he says. “Teach them about where you are and about your relative with the Brain Injury.”

A majority of people, however, wait until there is a crisis to seek such help. “Unfortunately, most people are reactive in how they use specialist help and so they suffer the effects of serious decline in their own psychological wellbeing,” says Dr. Pete. “It is ultimately more costeffective because you’re not necessarily having to go through all of the expensive assessment and complicated, intensive appointment times if you already have contingency plans for a crisis.”

Clinical neuropsychologists can often be accessed through a referral from your GP under a Better Access Mental Health Care Plan, including group or individual programs.

PsyCare, a private psychology organisation with locations around Brisbane, runs group programs aimed at assisting caregivers of people with an ABI to adjust and cope in their new roles. If you are interested in accessing one of these programs or in contacting a clinical neuropsychologist for individual services, contact PsyCare on (07) 3839 4400, or visit www.psycare.com.au for more information.

Dr. Pete has published a book called “The 7 Mid-Life Tsunamis,” which provides strategies for coping with major life stressors.

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To drink or not to drink That is the question. . . does a Brain Injury require changes to our use of alcohol and other drugs?

Alcohol and other drugs affect the central nervous system and, in varying degrees, impair a person’s ability to think clearly and control emotions and behaviour.

These abilities are often impaired by an Acquired Brain Injury so alcohol and other drugs are likely to increase problems with alertness, memory, problem-solving, and controlling behaviour and emotions. Anyone who used drugs as a coping strategy for stress or during social interactions is likely to continue as things will be even tougher after a Brain Injury.

Drug use is sometimes increased to cope with the enormous grief, stress and social isolation experienced.

Illegal drugs Taking illegal drugs after a Brain Injury can have a number of implications, apart from the legal and financial issues. Any 11 / B R I D G E M A G A Z I N E

prescription medication for pain, epilepsy or mood disturbance could interact badly with illegal drugs.

Similar to alcohol, many illegal drugs have an adverse effect upon our ability to control behaviour, emotions and thinking. There is also a risk of acquiring another Brain Injury due to risk-taking behaviour, distorted sensory perception and slow reaction time for activities like driving.

Should I drink at all after a Brain Injury?

What about alcohol, one of the most common legal drugs? Studies suggest that the use of even ‘normal’ amounts of alcohol for people with a mild Brain Injury may be associated with poor neurological outcomes as indicated by brain scans, performance on neuropsychological tests and increased behavioural problems.

Many specialists recommend that people stop drinking for at least one year after their injury.

If drinking commences after that, only small amounts should be taken to guage the effects and determine if there are negative consequences such as coordination problems, aggression or social disinhibition. It is important to recognise changes in their cognitive, emotional and behavioural functioning and how alcohol affects these changes. Family members usually can provide the best feedback, particularly if the Brain Injury has affected self-awareness.

Some people are strongly advised not to drink or take drugs at all after their injury due to particular medical conditions or the use of prescribed medication e.g. alcohol can lower the seizure threshold for a person with epilepsy. For safety considerations people are encouraged to ask their doctor for advice on alcohol and drug use. Also, people may require an intervention or programme from alcohol and drug support services.

Facing a drug dependency A dependency on alcohol or other drugs is fairly common after a Brain Injury, whether it was a pre-existing condition before the Brain Injury, or comes about from coping with depression, frustration or social isolation.

Personality changes arising from impulsivity can also mean the controls are lifted on what was once a safe usage.

What can family members do?

Tell your loved one’s friends of the dangers of continued drinking or drug use after a Brain Injury. Get them to work with you on reducing or eliminating the problem. If the family member with a Brain Injury is still in a rehabilitation program, advise the team and work with them to: • encourage your family member to take responsibility for his or her own behaviour • provide your family member with consistent feedback • help your family member deal with the feelings that may have caused the dependency.

Life, be in it A Brain Injury may cause decreased judgement, poor memory, and difficulty in concentration, so your family member may not listen to your advice. Sometimes the best way to prevent use of alcohol and other drugs is to make sure your family member has enjoyable activities and relationships to fill the day. Avoid the social isolation that can lead to substance abuse.

In making a decision on whether to keep drinking or using recreational drugs, consider the following points: • Using alcohol or other drugs will dampen recovery • Brain injuries that cause lack of coordination will worsen under alcohol or other drugs • Problems with impulsivity, concentration and memory can be exacerbated • Brain injuries can cause problems with thinking, such as concentration and memory • After a Brain Injury, alcohol and other drugs have a more powerful effect • Depression will be worsened • After a Brain Injury, drinking alcohol or using other drugs can cause a seizure.

Given the potential issues involved, it is definitely worth thinking about quitting alcohol permanently after a Brain Injury.

Talk about it Talk with your family member about what he or she will do when friends offer alcohol, tobacco, or other drugs. Discuss ways of coping with stress and other problems in a positive way.

Go over ways to have fun without drinking, smoking or taking other drugs.

Remove the temptation Remove alcohol, tobacco, and other drugs from the house. If that isn’t possible, at least make them less accessible and visible. Also keep an eye on over-the-counter drugs and substances that could be inhaled. Ask one doctor to take responsibility for all medications to prevent your family member from misusing or abusing prescription medications.

Ask for help If drinking or using drugs is causing problems for someone you care about, you are not alone.

Help your family member take charge of his or her life. You can talk with rehabilitation specialists and health educators, or attend support groups like Al-Anon and Nat-Anon.

A good place to start is your State Brain Injury Association.

Neuroplasticity

Neuroplasticity refers to the changes that occur in the organisation of the brain as a result of experience. A surprising consequence of brain plasticity is that a given function can move to another location in the brain as a consequence of training or brain damage.

The concept of neuroplasticity challenges the mechanistic idea that each brain function has a particular location that is hard-wired from birth, and the related idea that human nature is, to a large extent, fixed and unchangeable. According to the theory of neuroplasticity, thinking, learning and acting actually change the brain’s anatomy.

Many experiments have shown that if a section of an animal’s brain is removed, other sections will frequently take over its tasks. This goes a long way to explaining the cognitive improvements people usually experience in the years following a Brain Injury.

There is no fixed period of time after which plasticity is blocked or lost. This rewiring of the brain occurs as a response to injury, and also to training. This is why neuroplasticity is a major reason for taking rehabilitation to heart following a Brain Injury.

There is solid evidence that neurogenesis, the formation of new nerve cells, occurs in the adult, mammalian brain — and such changes can persist well into old age. The evidence for neurogenesis is restricted to the hippocampus and olfactory bulb. In the rest of the brain, neurons can die, but they cannot be created.

Following a Brain Injury, one woman feels as though she is in constant free fall. However, a set of electrodes on her tongue stopped the sensation, and after a year of treatment she no longer needed the electrodes — her brain had rewired itself to regain her sense of balance.

In another case, an amputee is tormented by an itch seeming to come from his missing hand. A neuroscientist finds that if the man scratches his cheek, the itching is relieved. Another amputee had phantom pain from his missing arm, yet after a month of treatment with mirrors, his brain saw the reflection as the missing arm and rewired itself — the pain disappeared.

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My family’s journey Belinda Adams on her family’s journey through Acquired Brain Injury

In March 2012 I found myself living every parent’s worst nightmare when my son sustained life-threatening injuries in a car accident. Initially they did not expect him to survive the night due to a fractured spine, collapsed lung, broken ribs and severe head injury. I was greeted with this news by my cousin as I stepped off the plane in my hometown of Broken Hill. I had flown there for a brief holiday and was unable to get a flight back out to Brisbane until the following morning. To say this was the longest night of my life would be an understatement – no words will ever describe the helplessness I felt at that time. My son spent two weeks in a coma before waking and transferring to the neuro ward and making slow but steady progress with his recovery.

Stuck in limbo The neuro ward is an acute ward, and after a few weeks my son had progressed enough to be transferred to the Brain Injury Rehabilitation Unit (BIRU). Unfortunately the limited number of beds (26 beds for the entire State) meant we were put on a waiting list, with no idea if or when a bed would become available.

The first six months after a Brain Injury is the most optimal time for recovery , so knowing my son may not receive urgently needed help was beyond frustrating. He was taking up a bed in an acute ward, and I found myself becoming therapist and carer in an attempt to rehabilitate him while stuck in limbo.

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I spent every waking moment at the hospital, and ceased to exist for my other two children, even though they were at pivotal times in their lives – my daughter was in her final year of high school and my younger son his first. Being a single mother, a lot of pressure was placed on my daughter at this time to take over at home while trying to study and all while under extreme emotional distress. I also had to go through the process of applying to become my son’s legal guardian (as he was over 18) so I could handle his medical and financial affairs.

This was a very time consuming and stressful process which involved me attending a hearing at QCAT. This added a lot of pressure to an already stressful time.

Financial strain I also had to apply for Centrelink benefit as being a single mother living on a casual wage I had no sick or holiday entitlements. I stopped working to help with my son’s recovery which put my family under great financial strain on top of everything else. We were very lucky to have a great support system around us which got us through this very difficult time with donations of vouchers and home cooked meals.

I am very thankful for the kindness we were shown throughout this time by family, friends, and even complete strangers.

I began doing my own research on other options for rehabilitation only to find that BIRU is the only facility in Queensland specialising in Brain Injury rehabilitation.

My son did eventually go to BIRU (after being moved around the hospital to wherever a bed was available) but he was one of the lucky ones.

I realised that with Acquired Brain Injury being an invisible disability, it is a subject some feel uncomfortable to discuss within the community. The more I found the courage to speak about it, the more people I have found who also have been touched by this in some way in their own lives.

The need for support Throughout this experience I had been working on my first screenplay “Chasing Jon” which touches on the condition. Our production company BlushPunk productions is committed to raising awareness and supporting Synapse in their mission to reconnect those in the community living with or affected by a Brain Injury. If it had not been for the help my son and I received from so many in the community we wouldn’t be where we are today.

My son is now back working and living a full life, and I hope to pay forward the generous support we received to others in need.

Supporting young people

Young people experience a lot of changes and challenges growing up, from the pressures of study and work, through to physical, psychological and social changes – it’s not surprising that this can be a difficult time in their life.

All of these changes are really important for a young person as they lead to the development of essential life skills including social skills and problem solving skills – but it’s hard for the young person and their loved ones to see these upshots when in the middle of it.

Normal changes vs mental health issues As young people go through these changes, raising sensitive issues and working to resolve problems with them can be challenging. When you are worried about someone, it is important to consider whether your worries are related to ‘normal’ changes in a young person, or whether a mental health problem is developing.

Sometimes working out which is which can be tricky, but some things to look for might include changes in sleeping patterns, changes in mood or behaviour, and changes in diet and weight. While many of these changes might just be part of the normal ups and downs of life, if they persist for an extended period of time and begin to significantly impact on other aspects of the young person’s life, it is possible that a mental health problem may be developing.

Things you can do to help You can help by keeping communication

open, spending time with the young person and taking an interest in the things that matter to them. It’s also important to encourage and support their friendships, as well as activities that promote mental health such as exercise, good eating, regular sleep, and doing things the person enjoys. Some important things to remember about young people: • They need a sense of belonging, connectedness to their family, friends and community, and to feel like they are making a meaningful contribution • Consistent rules are important, but try to involve the young person in negotiating acceptable rules and limits • Striking a balance between letting young people take responsibility and having independence while providing support is important for development • Young people need to do things differently from their parents and become individuals in their own way • Mistakes happen, but use mistakes (whether by you or the young person) to learn and keep moving forward.

Communication If you do become concerned about a young person it is important to talk openly and honestly with them, and let them know you are concerned, reassuring them that you will be there for them, and ask what they need from you. Sometimes we feel like we need to have all the answers, but it’s common for young

people to not open up to family. If they won’t talk to you, they may be comfortable talking to someone from headspace.

The onset of mental health problems during adolescence can have a significant impact on the development of important skills if left untreated, so it is important to let them know that there is professional help available like headspace at www.headspace.org.au. This service helps 12-25 year olds in the areas of mental health, general health, education and employment services, and alcohol and other drug services. It has more than 65 centres across the country, as well as ‘eheadspace’ which is a confidential, free, anonymous, secure space where young people can chat, email or speak with qualified youth mental health professionals. headspace is the National Youth Mental Health Foundation that helps young people who are going through a tough time. Visit www.headspace.org.au for more information.

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Brain training Can we train our brain in the same way training can benefit our physical fitness?

Brain training assumes that our cognitive abilities can be improved by training the brain, in the same way physical fitness improves our physical abilities.

It is a pleasing idea, particularly for people who have acquired a brain injury as it suggests we can train our brain to make up for lost cognitive abilities. There is a possible scientific basis for this due to neuroplasticity – the ability of the brain to change neural pathways and synapses due to changes in behaviour, environment and neural processes. Research confirms that some aspects of our brain remain ‘plastic’ for our entire lifespan, and that mental stimulation can reduce the risks of dementia (e.g. learning a second language or a musical instrument).

At this stage there is limited evidence for brain training beyond the confirmed benefits of: • formal education • being actively mentally engaged in life • continuing to learn • exercises designed to challenge cognitive skills • physical exercise • good nutrition • stress management • good sleep patterns.

A sure fire way of ensuring the best performance from our brain is preventative strategies such as minimising depression, anxiety and stress.

Some research shows that brain stimulation can help prevent age-related cognitive decline, reverse behavioral assessment declines in dementia and Alzheimer’s.1 In experiments, comparing some computerbased brain boosting exercises to other computer-based activities, brain exercises were found to improve attention and memory in people over age 60.2 However, the evidence is not necessarily conclusive as other research fails to find improvements.3 1 Spector, A; Thorgrimsen L; Woods B; Royan L; Davies S; Butterworth M; Orrell M (2003). “Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: randomised controlled trial”. Br J 2 “Memory enhancement in healthy older adults using a brain plasticity-based training program: A randomized, controlled study” PNAS USA. 2006 August 15;103(33):12523-8 3 www.nowgamer.com/news/174/professorattacks-brain-training

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I was really excited when I read an article in a recent issue of Bridge. It was the article “But You Look Fine”. For a long time I have reacted strongly when someone sees me walking around, talking and so on, and then comments on my recovery, and says something inane like “I’m so glad you are fully recovered!”

Of course, I am grateful for the thought. The speaker wouldn’t have said something like that unless my welfare was in mind, but it grates because most people have no idea of what it is like inside my head. I’ve also discovered that it is very difficult to explain to people how I feel.

Now, having said my piece on that, I want to tell you how important exercise is to me, and, I hope, to yourself.

A bit of background: when I came out of hospital in those dismal days, I was in a wheel chair. We moved to a different State and now live near the beach. I eventually graduated to a walking stick.

Can you imagine how difficult it is to walk in sand using a walking stick? It was time to throw that piece of equipment away. Walking in sand seemed to be good therapy for my wobbly

legs, and I would often fall over. Soft landing in sand! However, with a commando-like wife encouraging me on, I managed.

I used to hate hearing “Come on, let’s go for a walk!” and yet it was the discipline I needed.

A number of years on, when I was walking my german shepherd, a lady stopped in her car and said “I must commend you on the distances you walk! When I’m driving around, I see you in all kinds of places! Why do you do it?”

I could have said “my dog needs walking”.

Instead, out of the blue, I said “because I can!”

That chance comment has turned into an extremely important motivation tool for me. I can walk. This morning I saw on TV a lady who had some kind of disease a number of years ago, and lost her arms and legs. She was a triumph of perseverance, reaching with her prosthetic arms, walking on her prosthetic legs. How well off I am!

The point of this short piece is to talk about the importance of exercise for us. Walking is free! The cost is an important factor for those of us on a pension. Last year, when summer set in, I found that it was too hot to walk much

Because I can Rick Bowie looks after his body as well as his brain

during the day. So I joined a local gym. This gym was having a “free to join this month” kind of promotion. I found out that I could join without joining fees, and it would only cost me $12.50 a week – eminently affordable!

Here, during the summer, I can pedal, walk, lift, push, and do all kinds of exercises in a safe (and cool) environment. I had to get a letter from my doctor, saying something like “no sudden bursts of lifting” . . . as if!

Nevertheless, I enjoy doing what I can do.

I’ve already had to retire some t-shirts which were getting too tight across the shoulders, so something good is happening.

Another blessing is that it is great to feel tired for a physical reason, instead of feeling the fatigue which seems to be produced by a brain which is still hurting. I have the privilege of being able to walk home and rest as long as I need to.

Memory issues are of no account. There

are moments, however. I prefer to leave my workout list on a handy table top. I find this easier than carrying it around. If I carry it and put it on the floor next to me I sometimes fall over as I bend to read it! So, I would rather get up and walk.

The other issue here is that I look at the numbers on the desk top then go to the “machine” and sit down. By the time I’ve got that far I find that I often forget the number of plates to engage, so I get up again and walk over to check.

See how easy it is to get that extra “walking” exercise! The beaut part is that it doesn’t matter how many times I forget, I am ahead with my walking!

I seem to have only enough energy to visit the gym (within walking distance from home) four times a week for about half an hour each time – any more and I know in my body I’m overdoing it. However, I can bump that up a

“It is great to feel tired for a physical reason, instead of the fatigue produced by a brain which is still hurting.”

notch if I think I can!

Some days I don’t go at all – it might be too wet to walk, for instance. No matter, there are many exercises you can do at home, and without weights. Depending on your own situation, it is probably better to have someone at home with you. If you live on your own there are many simple exercises you can try (after checking with your doctor). I prefer the Pilatestype exercises, because they tend to be gentle and not too demanding, but still providing benefits which multiply over the days and weeks. Plus, I lie on the floor to do them - no chance of falling over here!

I encourage you to try something to get your circulation going, and to remind your body that you have muscles that are probably crying out for some activity (like my german shepherd!)

I started all this exercise bit thinking that if I can get below the ears fit and healthy, then maybe “between the ears” might catch up. No evidence of that yet, but the future is a long time. I can keep working at this grand experiment, and who knows . . . ? Best wishes as you set out on a new activity.

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Parenting from a spaceship Maria Goncet’s tricky adventure of parenting after a major stroke

I had a massive stroke four years ago, and I have been trying to adapt since. This event has affected my family and I dramatically.

My youngest child and only daughter, was only 18 months old at the time, too young to remember mum. To help her remember, I show her lots of pictures of us together prior to the stroke. Sometimes she doesn’t recognise me in the pictures, so I have to explain “That’s you, and that’s mummy”. It makes the job of parenting very colorful to say the least.

I have asked my husband on countless occasions if I should be less strict, and he just shakes his head. I guess he doesn’t know the answer either. We are both treading water.

The tricky adventure of parenting Parenting can be a very enjoyable adventure, or a very tricky one. In our case parenting together is a privilege, as I came so close to not being here for it. It can get tricky at times, but it is always rewarding.

Sometimes I don’t know if my children understand me, so I tend to raise my voice. In 17 / B R I D G E M A G A Z I N E

that case, I imagine it gets a little loud and scary for them. The children’s friends can be scared when they first see me, but it doesn’t take long for them to become friendly once their parents remind them to use their manners. In all cases, I always look on the bright side of life, like Monty Python used to say.

Alien in a spaceship Whenever I’m wheeled to the kid’s school the other children look at me as if I were an alien. I now go around thinking I’m the coolest mum as I have a spaceship, and all the other mums don’t. This is an example of how I have developed a thick skin. Most of the time my children are glad to see me rock up in my spaceship, but every now and then, let’s just say that they are less enthusiastic.

I have decided to become a more hands-on parent, instead of always letting my husband fly

solo with the enterprise of parenting. I guess it’s not an easy job. Parenting is a two-person job whenever possible. In my case, I’m happy to be back. I feel I have to learn to appreciate the little moments in life.

Also, I have to learn to accept that for some children who don’t see me on a regular basis, the way I look now can be very scary – acceptance is the key. The sooner I learn that lesson the better.

Why I am lucky Now let me tell you why I consider myself very lucky to tell this tale. I have three beautiful children, and a very supportive husband. The children woke me up very early this morning to share some programs on their computers. They jumped in bed with me, and we shared cuddles, stories and kisses. Moments like these are very special for me, as there are no other adults

“Whenever I’m wheeled to the kid’s school the other children look at me as if I were an alien.”

of the person who was coming to give me a shower, so I asked my husband. To my surprise, my daughter remembered.“ Elaine”, I heard her say. It is good to see how much my daughter cares for me.

involved. I have the children’s full attention.

However, it is not always so, whenever my husband or any other adults (such as carers or their grandparents) are around, the children tend to focus their attention elsewhere.

A good example of a special moment occurred the other day. I initiated a board game with my daughter in which I had to throw some dice.

Well, my daughter was so worried that the dice would end up on the floor, she started throwing them for me. We were having so much fun, you could hear the laughter from the street. It is these moments I’m learning to cherish.

I lived in a bubble prior to my stroke, but now I see (even though I’m legally blind). I now look at the world around me differently, in a new light.

Let’s say I don’t notice the children staring at me at the school gate when I pick up my kids.

I don’t stress if my daughter wants to throw the dice for me, that’s part of the charm. If she likes to take on the role of the grown up, I let her. For instance, this morning while we were having breakfast, I couldn’t remember the name

Accepting the new me It is only thanks to the love of my husband and children that I can dedicate so much time to my recovery. I can go swimming as often as possible with my carers. I spend as much time as I can doing my writing, thanks to the fact my husband supports me in every way. Sometimes I get frustrated, as I feel very out of touch with reality, however I realise there is only so much I can do after having had such a severe head injury. It has taken me a while to accept I am not the same person I was before the stroke.

Acceptance is hard.

The only reason I survived is because I lead a very healthy lifestyle prior to the stroke.

Everyone is involved in my recovery, and I wouldn’t be honest with myself if I didn’t acknowledge that. But I keep talking about my recovery, and what I started to write about is parenting. Going back to parenting, and if you are a parent you’ll agree, being a parent isn’t always an easy task. Being a parent whose children were too little to remember mummy pre-stroke, well, let’s just say it makes parenting a little more complicated.

Take today as an example, I went to see my second child play rugby, all the parents were there, and they all seemed to know me by name.

But due to my short-term memory issues, I can’t remember who they are, so my husband has to come to the rescue. I went to the children’s school to share some of my Spanish food. I made churros, which is a doughnut, and the children had to dip them in hot chocolate.

The entire experience was very enjoyable, and even though some children were visibly scared of the way I look and sound, the entire exercise was well worth the effort.

Such is life Let me be honest with you, it gets really tiring. My husband is starting to see me as one of his projects. I started out being his soul mate, and now I’m less of a soul mate and more of a task – isn’t that a shame. But such is life, and I ended up on the other side of the world, with only my husband to support me.

These are some of the issues I encounter on a regular basis, I imagine they are not unlike any other parent’s. That said, I happen to have the advantage of a disability or two! My issues are colorful, and some of them will make you laugh and cry at the same time. The purpose of this exercise is to make your day as enjoyable as possible, and to shed some light on parenting after a stroke.

Sugar, diabetes & Alzheimers A 2005 study at Brown University in the USA established a strong link between type 2 diabetes and a higher risk of developing Alzheimer’s disease. It is well known that lots of carbohydrates like sugar in our diet leads to cancer, diabetes and heart disease. But further studies are establishing stronger links between diabetes and Alzheimer’s.

Our blood sugar levels shoot up when we eat simple carbohydrates like sugar which are broken down easily by our bodies. A high sugar diet can actually increase the death rate of normally healthy brain cells. There is still no definitive cause for Alzheimers established as yet, but recent research suggests a possibility that it could be the same disease as type 2 diabetes.

Regardless of the outcome, all the current research backs up the fact that exercise and a healthy diet are good for your brain!

The good fats to fight dementia There is a growing body of evidence to suggest that exercise and diet can be very important for preventing or reducing the effects of dementia in later life. A high intake of saturated fats have been linked with increased rates of dementia. These fats can be found in meat, fast food and any food that has been fried.

However, ‘good fats’ can lower the risk of dementia, such as the fats found in olive oil and fish.

Which fats are good fats? Monounsaturated fat comes from food like peanuts, almonds, cashews and avocados. It is also found in cooking oils sourced from, olives, canola, soybean, sunflower or sesame seeds.

Polyunsaturated fat comes from food like fish, pine nuts, linssed, tahini, sunflower oil, and brazil nuts.

Polyunsaturated and monounsaturated fats are found in fish and olive oil, and are associated with a reduced risk of dementia. Foods that are high in antioxidants such as tomatoes, pinto and kidney beans, pecan nuts, cranberries, blueberries and oranges also seem to be good for brain health.

These good fats can still contribrute to obesity if eaten in quantity, so like so many aspects of good health, eat these foods in moderation.

Omega 3 fatty acids have got a lot of publicity over recent years, and this has led to a huge demand as supplements. However, a balanced diet can ensure you receive all you need of this fat that is particularly good for brain function. Good sources are oily fish like salmon.

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Neurofeedback therapy Can we train our brains?

I had a massive stroke four years ago, and I have been trying to adapt since. This event has affected my family and me dramatically.

The world of neuroscience is vast and expansive. As space exploration extends the horizons of previously unseen universal territories, the neural space of brains and its synaptic operations are seen, monitored and finely tuned using neurofeedback therapy.

Evolved from scientific research undertaken in the late 1960s, this form of biofeedback uses real-time displays of electroencephalography to illustrate brain activity. Initially neurofeedback therapy was animal-based. It showed how the electrical activity of the brain could be changed.1 What is neuroscience?

The first recorded use of this technology was 1963. This branch of science focuses on the study of brains and nervous systems in humans and animals. It “deals with the anatomy, physiology, 19 / B R I D G E M A G A Z I N E

biochemistry, or molecular biology of nerves and nervous tissue, especially their relation to behavior and learning”.2 A biofeedback system for retraining brains and brainwave rhythms evolved from this research.

What are brainwave rhythms The brain generates waves from individual cells called neurons that communicate with each other by electrical changes. These waves are measured in cycles per second called Hertz (Hz). They fall into four types called alpha, beta, gamma and theta. These form a distinct patterning that can be seen on a computer monitor and saved onto media such as digital disc or paper.

A 1930s discovery found that brainwave types need to interact flexibly for optimal health. When the brain is injured by either physical accident or ill health, abnormal patterns form resulting in slower brain activity in relevant areas.3 A continued transmission of abnormal rhythms from a brain to a body

causes imbalances in optimal functioning.

What is neurofeedback?

Neurofeedback (also known as quantitive electroencephalographicbiofeedback), is currently used in research and private settings.

Advocates say it enables the body to bring itself ‘back into balance’ and that it’s non-invasive application enables a self-practised healing journey for children and adults.

By focusing on a specific pattern to regulate its movement, an injured brain can be restored to health. Since the 1990s, it has become available to individuals in a private setting.

There is currently no health subsidy for consumers either in Australia or abroad.

How does it work?

American psychoneurophysiologist, Dr Margaret Ayers, discovered that the brain produces different theta frequencies in its damaged area after a head trauma. Theta waves are associated with sleep, deep relaxation and

visualisation. Dr Ayers states that neurofeedback therapy helped individuals to produce 15 to 18 Hz theta waves, which she believed would lead to a healthier and more active brain.

Conditions that have shown improvement Proponents of neurofeedback therapy say that conditions that have responded well include closed head injuries, ADHD, epilepsy, autism, learning disabilities, stroke, and coma, and that currently inroads are being made into successful treatment of or slowing of various dementias.

In relation to epilepsy, Dr Jonathan Walker, in Neurofeedback: Treatment of Epilepsy writes: “Commonly, drugs may be reduced or eliminated, and side-effects consistently reduced. Improvements in comorbidities, such as ADD, learning disabilities, depression, anxiety, and memory loss also occur. It should be an integral part of the treatment of these patients.” He also states that “the use of this therapy in patients who experience intolerable side-effects from antiepileptic drugs has been successful. For pregnant women, it poses no risk to the fetus’.

Criticism of neurofeedback therapy Some critics argue that success is not necessarily due to brainwave training and that one is able to achieve harmony when a higher level of alpha wave production occurs. Some examples given are when one is under threat of mild electric shock or has a profound belief in the technology used. The financial cost of neurofeedback therapy is also criticised as excessive for little gain.

In 2009, David Vernon at Canterbury Christ Church University in England argued that the “notion” that neurofeedback therapy enhances the mood has yet to be firmly established.

Christian Jarrett, PhD in “Brain Myths” 2013 proffered that many studies tended to be of poor quality lacking control groups and proper blinding. Currently, the report has been revised to show that controlled studies and analyses are now occurring.

Summary In Australia and worldwide, research and practice of neurofeedback therapy continues.

Given the mixed results from research to date, rigorous research is definitely warranted using control groups and double-blind studies to evaluate the efficacy of this therapy.

AUTHOR Robyn McComas Magers MA (Hons) is the Research and Communications Officer with the Stroke Association of Qld Inc. As a stroke survivor, she forms part of the SAQ Peer Support Team for stroke survivors and their families.

NOTES 1 www.cambridgeneurofeedback.com.

2 www.merriam-webster.com/dictionary/neuroscience 3. Jonathan E Walker, MD and Gerald Kozlowski, PhD at http://www.littlepsychologicalservices.com/pdf

MY EXPERIENCE WITH NEUROFEEDBACK THERAPY

In March 2012, I experienced a left lateral thalamic lacunar stroke. As strokes go, the outcome could have been much worse. However for me the effects were life changing. A year later, progress was good and I was feeling all was right with the world.

In July 2013, I experienced deep depression coupled with severe anxiety. Never clinically diagnosed with major depressive disorder, I now was. Feeling trapped, I was morbid and apathetic about everything. With the world at my feet, I could neither see it nor joyously engage in it. The neurologist told me in 2012 that I would be better in four months. I thought what did he know?

I sought the help of a psychiatrist, Dr Sue Splatt. The course of treatment involved anti-depressant/ anxiety medication plus lifestyle changes such as being kind to myself, resting more, and exercising each day. But nothing worked, and it appeared that I was resistant to anti-depressants. Mood levels continued to plummet to the point where I was ready to try anything just to have one happy day.

As a volunteer with the Stroke Association of Queensland, I learned about the many different available neuro-rehabilitation therapies, including neurofeedback therapy. Its merits were praised by the stroke-survivors who had experienced it. I was ready to try it.

BRAIN FUNCTION ASSESSMENT In May 2014, I underwent an EEG assessment which used three electrodes placed on specific brain areas, and I could see the patterns which indicated different brain events. My brain immediately responded to automatic movements such as blinking, sneezing, stretching and talking etc. When my jaw clenched, I could see the pattern of tension revealed.

The assessment revealed damage to areas of both left and right hemispheres. It showed the patterns of stroke, anxiety and depression, as well as massive interruption of oxygen to one area. I was asked how this happened. I could think of two prior anaphylactic shock episodes: the last was almost fatal.

THE ROAD TO HEALING It appeared that at least 20 half-hour training sessions were required. Ready to start, I asked how to proceed. The answer stunned me: ”You have to work it out for yourself. I cannot show you how to do it.” This was a challenge I liked, and so there and then my first treatment began.

The areas requiring treatment were both frontal and fronto-temporal lobes as well as the prefrontal cortex. Over the next six weeks, I met regularly with the computer and its challenging screen – the screen displayed a moving yellow column on a bar chart coupled with a bell ring that rewarded me for successfully holding a beneficial pattern. The goal for health was to achieve 2,000 bell rings in a 30-minute training session and then repeat the success over a period of sessions.

HOW I DID IT Because of the damage caused by depression and anxiety, the right frontal and fronto-temporal lobes were the first point of attack. Each area received a half hour of training a week. Alone with the computer, I tried to work out how to make that bell ring. I did it by intense focus on one spot. I could see my brain rhythms as I sat there, and how organised they became when the bell rang.

After a while I was able to actually feel the specific brain area and how it could behave with a feeling of complete calm, rather than anxiety. With the help of three electrodes and concentrated focus, reward followed – the bell started to ring continuously, and with each weekly session my goal became attainable. I focused as though my life depended on the outcome, and to my surprise and that of my doctors, within three weeks I was free from depression, anxiety and medications.

THE RESULTS After 26 neurofeedback therapy sessions, my brain and I are happily functioning in an orderly pattern. As with many other medication-resistant depressions, there was no ECT and no deep TMS therapy – there was just the computer, a little bell and me.

Once a skeptic about neurofeedback therapy, I now believe in its merits. It has not cured all of the physical deficits I have, but it has enabled me to accept them, and to believe that one day these will also be a thing of the past. Each day is now welcomed with a zest for experiencing new adventures.

My only remaining fear is that the black dog may return. However, I am assured that without another brain-damaging experience, all will be well because I know how to bring my waves back into order. I intend to have a tune-up session each year to maintain optimal brain health.

IN SUMMARY I am obviously biased and believe that neurofeedback therapy contributes immensely to one’s wellbeing. If neurofeedback therapy is proved to work for most people, I hope government health care initiatives will make it freely accessible or at least provide a co-contribution. The long-term cost savings would prove to be immense, and the only ones who would obviously lose out would be the drug companies.

– Robyn McComas Magers MA (Hons)

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Make The ‘Selfie-Less’ Wall!

If you supported BANGONABEANIE last year by buying a Beanie, how do you show your support this year? Easy! Donate this year’s Beanie to a homeless person! They get to be a little bit warmer this winter and you get to plant your face on the BANGONABEANIE Selfie-Less wall! How cool is that?

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Homeless Indigenous Australians Dr Clare Townsend investigates neglect, communication failures and lack of services and is looking for solutions

Indigenous Australians experience much higher rates of ill-health and disability than other Australians.1,2 Their need for assistance is more than twice that of other Australians.3 The limited knowledge available about neurocognitive disabilities amongst Indigenous Australians indicates there is a significant over representation of Indigenous Australians with neurocognitive disabilities and under demand for services4,5,6 Indigenous Australians are at least 14 times more likely to be homeless than non-Indigenous Australians.7 Homelessness creates mortality and hardship for individuals, disadvantage for families, and creates increased demand on the health, justice and other mainstream services.

People with a disability are at greater risk of homelessness than the general population. It is unknown how many Indigenous people with neurocognitive disabilities are homeless.

Given the increased rates of homelessness amongst both Indigenous people and people with disabilities, they are likely to be overrepresented.

Indigenous people with neurocognitive disabilities who are homeless are amongst the most disadvantaged Australians. They face many barriers to experiencing meaningful lives in the community. Disability is a new conversation for many Indigenous Australians.9 They do not identify as having disability. They may find the label of ‘disability’ stigmatising, judgmental or shameful. People do not

understand neurocognitive disabilities, the language of disability or the existing service system and remain on the edge of the disability service system.

Homeless Indigenous people with neurocognitive disabilities may be unaware of their right to services and they face difficulties in obtaining the services they need. Their access to services is limited by collective, intergenerational negative experiences of mainstream services. It is also limited by the nature of the current disability service system which is characterised by information and communication failures with Indigenous people and a lack of cultural competence, Indigenousspecific services and disability support staff.

This contributes to Indigenous Australians with neurocognitive disabilities being overrepresented in prisons and criminal justice settings.10 Disability within Australian Indigenous populations has received limited attention.

There is a dearth of accurate data identifying the experiences and needs of Indigenous homeless people who have neurocognitive disability. We need research about the nature and extent of neurocognitive disability within Indigenous homeless populations and Indigenous people’s perceptions and needs.

This research will inform policy and services that enable homeless Indigenous people with neurocognitive disabilities to enjoy meaningful lives in their communities.

Dr Clare Townsend’s work for Synapse focuses on the policy and service needs of Indigenous Australians with complex neurocognitive disabilities.

REFERENCES 1. SCRGSP (Steering Committee for the Review of Government Service Provision) 2011: p. 3.6.

2. Australian Institute of Health and Welfare. (2011a). Aboriginal and Torres Strait Islander people with disability: wellbeing, participation and support. AIHW Cat. no. IHW 45. Canberra: AIHW. 3. Australian Institute of Health and Welfare (2011b). The health and welfare of Australia’s Aboriginal and Torres Strait Islander people, an overview 2011. Cat. no. IHW 42. Canberra: AIHW. 4. Jamieson LM, Harrison JE, Berry JG. (2008) . Hospitalisation for head injury due to assault among Indigenous and nonIndigenous Australians, July 1999 - June 2005. Med. J. Aust.

188(10): 576-579.

5. Stanton J, Jessop M, & Henstridge J. 1994. Acquired Brain Injury accommodation & support needs. Perth: Bureau for Disability Services.

6. Australian Institute of Health and Welfare. (2011b). The health and welfare of Australia’s Aboriginal and Torres Strait Islander people: an overview 2011. Cat. no. IHW 42. Canberra: AIHW. Retrieved from http://www.aihw.gov.au/.

7. COAG Reform Council (2013). National Affordable Housing Agreement- Homelessness 2011-12: Comparing performance across Australia, COAG Reform Council, Sydney.

8. Larimer M.E.,et al (2009). Health Care and Public Service Use and Costs Before and After Provision of Housing for Chronically Homeless Persons With Severe Alcohol Problems. JAMA, 301, (13):1349-1357. Retrieved on 10 February 2014 from http:// jama.jamanetwork.com/article.aspx?articleid=183666.

9. First People Disability Network (2013). Ten-point plan for the implementation of the NDIS in Aboriginal communities.

Retrieved 19December, 2013 from http://fpdn.org.au/10point-plan-ndis.

10. Baldry, E. Dowse, L. & Clarence, M. (2012) People with intellectual and other cognitive disability in the criminal justice system. Sydney, University of New South Wales.

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No warning on Aust wine labels

Did you know that any Australian wine exported to the USA must have the following warning on the label: “According to the Surgeon general, women should not drink alcoholic beverages during pregnancy because of the risk of birth defects. (2) Consumption of alcoholic beverages impairs your ability to drive a car or operate machinery, and may cause health problems.”

Senior Research Fellow, Dr Janet Hammill, has spent 19 years conducting ethnographic research into Indigenous community functioning and believes that the brains of babies are being sacrificed for political donations. She asserts that Australian alcohol manufaturers are politically powerful and use political donations to the major political parties to avoid taking responsibility for critical social issues related to alcohol harm, such as alcohol during pregnancy.

“Profit overides issues such as a lifetime disability for a baby”, said Dr Hammill. “It thwarts meaningful interventions and encourages a blind eye continues to Australia’s most socially destructive industry. The brain damage to a baby from alcohol exposure before birth sentences them to a lifetime disability.”

Fetal Alcohol Spectrum Disorders present a range of lifelong issues that need millions of dollars in human resource support, from the public purse, over the lifecourse of each affected individual.

A recent study from Canada showed productivity loss attributed to FASD morbidity was between half to more than billion dollars per annum. That was based on an extremely conservative prevalence rate of 0.3%.

Forty year veteran of FASD research, Professor Sterling Clarren, speaking in Toldeo in April, said potentially one in thirty people in the USA have brain damage associated with alcohol exposure before birth. He said it was a huge epidemic - way ahead of heart disease and cancer. This is a big deal he said.

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Discrimination & invisible disabilities Gerowyn Hanson is mad as hell and she’s not going to take it anymore A relative who is unable to work due to an autoimmune disease has posted her outrage on Facebook at the discrimination she experiences from looking “normal” but not working. She is tired of snide remarks like “you don’t look disabled” followed by admonishments that plenty of other people with a disability can find a job.

I have an invisible disability too. A car accident almost a decade ago left me with Acquired Brain Injury, and I have suffered rude accusations of being a malingerer or faking it. According to statistics, more than 80% of people receiving Centrelink Disability Support Pensions have an invisible disability, such as a mental health illness, internal organ dysfunction, soft tissue damage, or a Brain Injury, to name a few. One does not have to be in a wheelchair with tubes poking out of orifices to be unable to work.

These pensions are based on disabilities that make someone an “unreliable employee” and therefore at risk to an employer or others in the workplace. Unreliable, however, does not mean irresponsible. It could mean that pain, effects from medications, short-term memory loss or dysfunctional behaviours prevent someone from effectively performing the tasks of most job descriptions.

Time is money, and employers cannot take the risk of putting on a person who is not likely to be competent. Of course, there are many other complex factors that prevent people

with an invisible disability from being offered employment.

What causes the rude and the ignorant to believe they have the right to accuse others, about whom they know little and whose ailments they don’t understand, to make offensive remarks and draw conclusions based on nothing more than personal opinion? How dare they! Since when did voicing one’s ignorant, uneducated, unsolicited opinions become a right?

Why has shooting off one’s mouth first and asking questions later become acceptable?

Imagine if I met a an overweight person and told them “you’re fat!” or called a person with cerebral palsy a “spaz”? We’d be pulled into line and shamed. Well, what gives the ignorant and prejudiced the right to blame and shame those with an unseen disability?

Well, I’m as mad as hell and I’m not going to take it anymore. If you experience these insidious opinions, don’t take it on board and feel bad about yourself. Such ignoramuses want a confrontation. They want to see you upset. Call it what it is: bullying. Fuck ‘em, I say. Ignore, walk away, or have them forcibly removed for harassment but don’t give your power away by allowing them to make you feel ashamed for something you cannot help.

This is an excerpt from Gerowyn Hanson’s blog. Gerowyn is a regular contributor to Synapse and you can visit her blog at http://gerowynhanson.wordpress.com

Matthew ‘Richo’ Richardson to host BrainLink’s BEANIE and Barbie bash!

With Melbourne in the midst of a cold snap there’s never been a better time to bang on a blue beanie in Blackburn and fire up the barbie.

BrainLink chief executive officer Sharon Strugnell said the event would have an extra bit of sizzle with former high flying AFL star Matthew “Richo” Richardson to host activities with a surprise footy panel.

BrainLink will join in the fun for Brain Injury Awareness Week with its own special sausage sizzle, raising awareness for those with acquired Brain Injuries and their family and carers.

“We urge all our supporters to put on a beanie and grab a snag at this important time and note that if we filled the MCG the number would be a fraction of the Victorian families affected by an ABI.

It’s part of a nation-wide campaign which supports 1.6million Australians with an ABI.

Get into the spirit of the day by donning either a beanie, t-shirt or apron.

www.brainlink.org.au

Managing medications What you need to know about prescribed medications, problems that can occur and managing medications safely

As people get older, they often end up taking a range of medications for various conditions. Medications can have sideeffects that differ from person to person or with age, because the body processes them differently.

Depression and confusion are common sideeffects.

Drugs can also interact with each other. The interactions can be difficult to predict, and may cause unexpected side-effects (e.g. one or more drugs may become less effective). The more medications a person takes, the more likely such interactions are.

Reducing distress and agitation can also help to reduce the number of medications a person needs. Encourage the person you are caring for to have a social life, to get out and about, to be involved in activities that hold their interest, and to stay as physically active as possible.

Medication don’ts Don’t stop using a prescribed medicine unless the doctor tells you to. Some medicines are not effective unless they are used all the time and for a long period.

• Don’t use other people’s medicines • Don’t use medicines that are out of date – they may no longer be effective • Don’t keep old or unused medicines – your pharmacist can dispose of them for you • Don’t change the dose or the time the medicine is taken without the doctor’s advice.

Questions you should ask Do ask questions of your doctor, pharmacist or nurse. If you don’t understand something, ask for it to be explained in simpler terms.

If you need an interpreter, ask for one. It is important to understand the following points about any medication: • What is the name of the medicine and what is it for?

• Are there any possible side-effects, and will they fade with time or continue as long as the person is taking the drug?

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• What should you do if there are side-effects?

• How long should the person be taking the medicine?

• What should you do if a dose is missed?

• Will the medicines interfere with others being taken? (take a list of all the person’s medicines or all the medicine containers with you) • Will the medicine affect other medical problems the person has?

• Is there anything the person should avoid doing or taking while on this medication (e.g. alcohol)?

• Is there a lower priced brand? (often the same medicine is available more cheaply packaged under a different name by another company).

Using medicines safely at home Use a “dosette” box – these plastic containers come in different shapes and sizes, and have compartments labelled by days of the week and meal times. A dosette enables you to organise the week’s medications and prevents uncertainty about whether or not a medicine has been taken. Pharmacists carry them. If you are unsure about organising tablets, your district nurse or pharmacist may be able to help.

Follow the directions given by the doctor, pharmacist or those on the bottle. Directions should include how much of the medicine to take (e.g. 2 tablets), how often to take it (e.g. once a day), how to take it (e.g. by mouth) and when to take it (e.g. with meals).

Take medicines at the correct time – some medicines work best on an empty stomach, others should be taken with food. The doctor or pharmacist can advise.

Obey warnings on the label – for example, it is dangerous to drink alcohol or operate machinery while taking many medicines.

Take note of side-effects that occur, such as drowsiness, forgetfulness, confusion or nausea, and discuss these with your family member and/or your doctor.

Keep a record of what is being taken.

Sometimes new drugs are prescribed without the doctor being aware of what other medications the person is on. Taking a newly prescribed drug on top of other tablets can cause serious side-effects. Use a “Medi-list” form, available from your pharmacist, to keep record. It allows you to list all the drugs, when to take them and the dosages. The pharmacist can help you fill it out and keep it up to date. Take it whenever you go to see any health professional (doctor, pharmacist, specialist, dentist etc).

Inform your doctor about all the medications, preparations and supplements being taken, and whether these are prescribed by a doctor, bought over the counter or provided by another practitioner.

Epilepsy “Epilepsy” is the term commonly used for a seizure disorder, in which an individual has more than one seizure. One seizure alone is not enough for a diagnosis of epilepsy, and may be a once-off occurrence after acquiring a Brain Injury. However, in some cases it can be a long-term issue.

Treatment for epilepsy is common immediately following a Brain Injury as a preventative measure, but this medication is reviewed during the course of in-patient or out-patient treatment, and discontinued if not immediately needed.

Epilepsy following a Brain Injury will usually develop three months after the injury but, as with any medical condition, this time can vary widely. The longer the time between the injury and the onset of seizures, the greater the chance of developing full epilepsy. Diagnosis of epilepsy requires an intensive examination – a G.P. should be consulted as a matter of course following an unexpected seizure.

If the seizures are multiple or severe, an ambulance should be called. Although minor epilepsy, with only the occasional small seizure, does not appear to be physically dangerous, there is anecdotal evidence that suggests it can result in neurological damage over many years if left untreated.

If required, the best help you can give to someone with epilepsy is helping them with their medication, in particular helping to make sure they adhere to the prescribed regime. You may need to get a first aid certificate so that you can assist if needed.

Label bottles properly. A bottle labelled “as before” or “take as directed” can be dangerous for a person who does not remember the previous instructions.

Keep medicines away from children in a child-proof cabinet. Never store medications in a container that could be mistaken for something else – use the correctly labelled and dated container. Likewise, don’t use the empty medicine bottles to store other things.

Storage – read the label to find out how the medicine should be stored. Heat, in particular, can affect medicines.

Lack of response – go back to the doctor if

This article is reproduced from “Those who care” published

by Brainlink, a Victorian-based service that is dedicated to improving the quality of life of people affected by acquired disorders of the brain, by providing support to their families and carers. Visit www.brainlink.org.au to find out more about Brainlink.

FURTHER READING Read our fact sheets at http://synapse.org.au: • Medication Non-compliance • Medication side-effects • Medication Safety.

A tonic-clonic (“grand mal”) seizure is the main cause for immediate concern, due to the risk of physical injury caused during a period of unconsciousness combined with convulsions, while an absence (“petitmal”) seizure should not be immediately dangerous, unless the individual is in a situation — such as driving or cooking — where inattention could lead to a dangerous situation developing. The fundamental rule for first-aid treatment of a tonic-clonic seizure is to pad the head with a cushion or pillow if safe and feasible, move fragile or dangerous objects out of reach, and be ready to call an ambulance if required.

Do not attempt to force something between the jaws to prevent biting or swallowing of the tongue. This used to be taught, but has been retracted. There is a much greater risk of injury with an object in the mouth, and there is no risk of swallowing the tongue. In particular, do not attempt to physically restrain someone without a great deal of skill and experience: The strength and unpredictability that can be exhibited during a severe tonic-clonic seizure can result in serious injury to the first-aider. Even if a helper has experience with physical restraint, there is a serious risk of injury to the person having the seizure.

the medicine does not seem to be working.

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Stepping it up with ICARE?

Regaining the ability to walk and improving overall conditioning are important rehabilitation goals after acquiring a brain injury that affects these activities. Gait and balance deficits limit the independence and quality of life of many individuals living with neurological disorders.

Physical movements once performed effortlessly and without conscious thought become laborious due to limitations in strength, sensation, coordination, and endurance.

Robotic devices exist for helping people to relearn their walking skills, but typically cost hundreds of thousands of dollars.

ICARE – an affordable solution?

ICARE is a motorised elliptical trainer for repetitive gait training that is far cheaper and for some, within the realms of purchasing for home use. If it proves successful, it may also be a way to provide more extensive rehabilitation through community-based services due to its far cheaper cost.

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The ICARE system is the brainchild of researchers and clinicians at Madonna Rehabilitation Hospital in Lincoln Nebraska.

During their research, they discovered an elliptical trainer that closely mimicked a natural walking pattern compared to others in the study, making it the most suitable for a gait assistance device.

Their aim was to add an intelligent motor system to a commercially available elliptical trainer which could modify the demands placed on an individual’s muscles while training.

How does it work?

Integrated sensors detect the level of assistance an individual needs to advance their legs. The motor reacts accordingly to provide the correct level of support. The addition of ramps, stairs and an unweighting system offer the ability to adapt the system to a variety of users and environments. Safety straps hold the patient’s foot in place while the automated elliptical

helps them move their legs in a walking motion.

One of the central purposes of rehabilitation is to help patients achieve their highest level of function given their specific limitations, and ICARE shows promising signs that it will help fulfill this goal in a very affordable way.

Initial research suggests that the ICARE trainer may provide a therapeutic tool for helping individuals regain strength and movement ability in muscles required for gait.

Further work is currently underway to assess the feasibility of using the ICARE trainer in an inpatient rehabilitation setting, outpatient rehabilitation setting and community-based fitness facility.

To read more about ICARE visit our website at http:// synapse.org.au/our-work/icare-assistive-rehabilitation.aspx

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Understanding and managing stress The first step a person can take to reduce stress is to become aware of the major sources of stress that exist in their life. The person may like to keep a stress awareness diary for a few weeks that lists the date, time, event, severity, symptoms, and coping strategies they used to ease the situation. The second step is to categorise different stressful situations as follows: • Controllable/Uncontrollable • Important/Unimportant This can help a person to stand back from their situation in order to view it more clearly and objectively.

FOUR SKILLS FOR MANAGING These are Awareness, Acceptance, Coping and Action skills. Some skills may be more useful in certain situations. Each skill may be explained better using a situation which people are often faced with after Brain Injury. To illustrate these skills, let us use the example of a person who is stressed because they have an appointment for a neuropsychological assessment.

Awareness skills This is getting a clearer understanding of the situation and how it affects the person.

Example: finding out what a neuropsychological assessment involves and the purpose of the assessment.

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Acceptance skills Acknowledging the stress and being realistic about how it affects a person’s lifestyle e.g. what aspects are controllable/uncontrollable or important/unimportant.

Example: Recognise that the assessment needs to be conducted and that it will probably be quite tiring and demanding. The person may not be able to control when and how long the assessment is but they can manage their thoughts and reactions to the assessment.

Coping skills Prepare to cope with the stressful situation by learning various strategies. Identify what changes a person can make to control the situation and reduce stress levels.

Example: Using Self-Talk to develop a constructive outlook towards the assessment.

Action skills Actively making changes to counteract or reduce the level of stress.

Example: Following through with the anxiety management plan and monitoring stress levels.

After the assessment the person can find a relaxing and enjoyable activity to wind down.

SOME COPING STRATEGIES FOR MANAGING STRESSFUL SITUATIONS Progressive muscle relaxation A person learns to identify muscle groups and the difference between tension and relaxation in the muscles.

• Tense muscles for 5-7 seconds and relax for 10-15 seconds.

• Time to master: 1-2 weeks, 2 x 15 minute sessions per day.

Slow breathing techniques Proper breathing habits are essential for good mental and physical health. The aim is to breathe deeply and slowly through the nose.

A person should feel greater movement in the stomach than the chest as they inhale and exhale. Learn to apply slow breathing as needed e.g. when feeling stressed, angry or anxious.

Visualisation A person uses imagination e.g. pleasant daydreams or memories to will him or herself into a relaxed state. Practice using visualisation three times a day for a few minutes or longer.

This is usually easiest for the person in the morning and at night in bed. Eventually, with practice a person can use visualisation in everyday situations when feeling uptight.

What is Positive Behaviour Support?

Brain injury treatment BC ’No head injury is too severe to despair, nor too trivial to ignore’ - Hippocrates, 48 BC Getting hit in the head with a sword provided plenty of opportunities to check out brain injuries for the early Greeks. Over two thousand years ago, Hippocrates wrote On Wounds in the Head, an excellent source of information regarding the extent of experience with brain injuries in classical antiquity.

Hippocrates was an ancient Greek physician born in 460 BC. He is often referred to as “The Father of Medicine” for his lasting contributions to the field as the founder of the Hippocratic school of medicine.

With the collapse of the classical world, the same sense of curiosity and scientific exploration did not return until the Renaissance in the 15th century when the Church gradually lost its power to censor ideas that contradicted its dogma, and prevent practices such as dissection of the human body. Here are some excerpts from Hippocrates’ work.

Historical responses to challenging and complex behaviours have included burning at the stake, hangings, imprisonment, torture and banishment from the community. While we have come a long way in most respects, some of these responses are still being used against people with a Brain Injury.

If anyone’s behaviours challenge the understanding of the community too much, they can still end up being imprisoned or being refused access to the local community.

Human history is littered with examples of punishment being used to control behaviour the community does not like. It is still a common approach, whether with prisons on the societal level or the subtle ‘cold shoulder’ at a personal level.

Positive behaviour support is a new approach to challenging behaviours. It is transforming the way we respond to people with disabilities when their behaviour prevents them accessing the community, or is a danger to themselves or others. It is now an internationally accepted way to provide support instead of punishment, and has been adopted by Disability Services Queensland and many other organisations in the disability sector.

Key points of Positive Behaviour Support So what is it? Positive behaviour support is exactly what it sounds like — a supportive, positive approach. Some key points of positive

behaviour support include: • we shouldn’t try to control other people, but should support them in their own behaviour change process • there is a reason behind most challenging behaviour • everyone should be treated with compassion and respect regardless of their behaviour • everyone is entitled to quality of life and effective services after acquiring a Brain Injury • our growing knowledge about how to provide support for positive behaviour can make a big difference • positive responses will be more effective than coercion and punishment.

How Positive Behaviour Support works So how would we approach a behavioural issue using this approach?

• Identify and understand the behaviour • Improve quality of life to reduce the incidence of challenging behaviour • Model and encourage positive behaviour • Develop positive intervention when challenging behaviours occur • Develop steps to manage crisis situations if needed • Keep evaluating the support strategies used • Support caregivers who are affected by challenging behaviours.

Like to know more? Visit www.synapse.org.au and read our fact sheets on Positive Behaviour Support and challenging behaviours.

On diagnosis and bandaging of a head injury . . . you should make inquiry as to all these particulars (for they are symptoms of a greater or less injury), whether the wounded person was stunned, and whether darkness was diffused over his eyes, and whether he had vertigo, and fell to the ground.

And with regard to the cure of wounds in the head, and the mode of detecting injuries in the bone which are not apparent, the following is my opinion: In a wound of the head, you must not apply anything liquid, not even wine, but as little as possible, nor a cataplasm, nor conduct the treatment with tents, nor apply a bandage to an ulcer on the head, unless it be situated on the forehead, in the part which is bare of hairs, or about the eyebrow and eye, for wounds occurring there require cataplasms and bandages more than upon any other part of the head. For the rest of the head surrounds the whole forehead, and the wounds wherever situated become inflamed and swelled, owing to an influx of blood.

Mortal wounds When a person has sustained a mortal wound on the head, which cannot be cured, nor his life preserved, you may form an opinion of his approaching dissolution, and foretell what is to happen from the following symptoms which such a person experiences.

When a bone is broken, or cleft, or contused, or otherwise injured, and when by mistake it has not been discovered, and neither the raspatory nor trepan has been applied as required, but the case has been neglected as if the bone were sound, fever will generally come on if in winter, and in summer the fever usually seizes after seven days. And when this happens, the wound loses its colour, and the inflammation dies in it; and it becomes glutinous.

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