011 - Bridge Magazine - DisabilityCare Australia (2013)

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In thIs Issue:DisabilityCare AustraliaBrain Injury Awareness Week 12th - 18th August


INDEX03 A better Deal? DisabilityCare - an excerpt

05 Answering the urgent need Why DisabilityCare is needed now

07 strategies For Coping Hemiplegia & hemiparesis

09 Problems With Vision Strategies and therapies to assist

11 Mopy Dick? Don’t let words govern you life

13 My World After Brain Injury Ann Wood talks about her life

15 travel tips For the Post ABI Journey Travel slowly...

17 substitute Decision Making Tough Decisions Ahead

19 Locked In syndrome Dream It To Do It

20 Back to normal A challenge for family life

23 Coming to terms With Loss The long journey to acceptance

25 the Big Bad Wolf Strategies for living with ABI

27 Loosing Friends A Personal Account Post Abi

28 Keeping Friends Useful communication tips

29 General legal Issues Legal issues and disability

BRIDGE VOLUME 11 – June 2013

ISSN 1448-9856

General Editor: Barry Morris

Contributing editors: Clare Humphries Lisa Cox Rick Bowie

National Development Manager: Glen Farlow SynapsePO Box 3356South Brisbane 4101P: 61 7 3137 7400 F: 61 7 3137 7452E: [email protected] W: http://synapse.org.au

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.


Jennifer Cullen, CEO of Synapse

bridgingTHE GAP

A step closer to a fair go for allImagine if you were part of a group responsible for planning a just and equitable society. Some of the ingredients

would no doubt include democracy, an impartial legal system and education.

Now imagine that you, and everyone in this group each have a disability in this new society; a brain injury, an intellectual disability, schizophrenia and quadriplegia among others. No doubt you would suddenly be paying a lot more attention to how people with a disability would be treated.

Australia has only provided very basic support for people with a disability, a situation that would change dramatically if the policy makers all had a disability themselves!

That will now change with the new National Disability Insurance Scheme (NDIS), recently branded as ‘DisabilityCare Australia’. This is a positive step toward providing the supports that will ensure a fair go for anyone with a disability.

Both of the major political parties have agreed that DisabilityCare is needed — the key will be to ensure that the necessary funds are there despite tough economic times and budget deficits.

It is also good to see that Indigenous Australians will be getting a fair go as well. In May 2013 the Gillard government announced $900,000 over three years for services to assist Indigenous Australians to understand and access support from DisabilityCare Australia.

“We know the prevalence of severe or profound disability among Indigenous people is around twice the rate for non-Indigenous Australians” said Minister for Indigenous Affairs Jenny Macklin. “Unfortunately, many Indigenous people are reluctant to identify themselves as a person with disability and often do not seek help with disability services.”

In the mean time, Synapse and other Brain Injury Associations across the country are

raising funds to make a difference for the 1.6 million Australians affected by Acquired Brain Injury (ABI). The BANGONABEANIE campaign encourages people to buy and proudly wear a blue beanie in support of Brain Injury Awareness Week from the 12th to 18th August 2013.

All profits from BANGONABEANIE will go toward improving essential and much needed services, including accommodation, support and resources.

There are plenty of things you can do too. Visit BANGONABEANIE.COM to buy a beanie, make a donation, download free resources or visit our Facebook page.

Whether you realise it or not, we all know someone affected by ABI they contribute to our community and deserve our support.

AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS

QLD Synapse Tel: 07 3137 7400 Email: [email protected] Web: synapse.org.au

AUS Brain Injury Australia Tel: 1800 272 461 Email: [email protected] Web: www.braininjuryaustralia.org.au

NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: [email protected] Web: www.biansw.org.au

VIC BrainLink Services Tel: 03 9845 2950 Email: [email protected] Web: www.brainlink.org.au

TAS Brain Injury Association of Tasmania Tel: 03 6278 7299 Email: [email protected] Web: www.biat.org.au

SA Brain Injury Network of South Australia Tel: 08 8217 7600 Email: [email protected] Web: www.binsa.org

WA Headwest Tel: 08 9330 6370 Email: [email protected] Web: www.headwest.asn.au

NT: Somerville Tel: 08 8920 4100 Email: [email protected] Web: www.somerville.org.au

ACT National Brain Injury Foundation Tel: 02 6288 1117 Email: [email protected] Web: www.nbif.org.au


DisabilityCare, the new name for the National Disability Insurance Scheme (NDIS), aims to provide long-term

person-centred care and support to all Australians with a significant and ongoing disability. It also has the potential to meet the support needs of many Australians who have an Acquired Brain Injury (ABI).

However, the experience of Brain Injury Australia (BIA) and its member organisations is that the needs of people living with an ABI are often overlooked and misunderstood by disability services, health professionals and governments.

Telling decision-makers what’s neededIn 2012, BIA and its member organisations

launched a campaign to ensure that decision-makers are informed about what it would take to get the NDIS right for people with an ABI. The first step was a national consultation focussed on eligibility and assessment. The outcomes were forwarded to relevant decision-makers, and the response was uniformly positive. The present report is in response to proposed the NDIS Rules. It provides an analysis and record of the views of key stakeholders across Australia on the “National Disability Insurance Scheme Rules Consultation Paper”. This is only an abridged excerpt from the report — the entire report can be downloaded from the links at the end of this article.

The aim of BIA’s response is to ensure that

the NDIS takes into account the needs of people living with an Acquired Brain Injury (ABI), together with their families and carers. These recommendations are based upon the outcomes of a three week national consultation. A complete record of these outcomes and a list of the consultees can be found in the appendices of the full report.

Key topicsEvery topic in the Consultation Paper

was relevant, in some way, to the care and support needs of people with ABI. Hence, this consultation has resulted in a set of responses to every question posed in the Paper. However, a smaller range of topics were considered to be of greatest relevance to this constituency, that is:

A better dealAn excerpt of Brain Injury Australia’s recommendations for DisabilityCare


•Disabilityrequirements•Earlyinterventionrequirements•Reasonableandnecessarysupport•Managementofplans•Supportingdecision-making.

Example of recommendations madeThe following is an illustrative sample of

the recommendations that emerged from the consultation sessions:•UseABIexpertstoassesstheeffectivenessof

early intervention in individual cases•Justify what supports are ‘reasonable and

necessary’ on a case-by-case basis•Ensurethatknowledgeofspecialistservicesis

widely disseminated and available in different locations, including regional and rural areas and that all people with ABI can be referred to and access those services equitably

•Assess the scope of a person with ABI’scapacity to make decisions in their best interests on a regular basis

•Holdbothregularassessmentsandamandatoryreview of the nominee arrangement.

Reasonable and necessary supportsConsultees were asked what supports they

felt would be ‘reasonable and necessary’ for people with ABI and their carers, and why. Their responses, in general terms, included:•respiteforcarers•socialandrelationshipsupport•specialisthealthcare,aidsandequipment•accesstomainstreamservices•transportfunding•psychologicalsupport•focussedcognitivesupport(e.g.for

decision-making)•specialistABItraining(e.g.forcarers,

nominees, support workers, Agency staff )•supportforindependentliving.

Brain Injury Australia and its member organisations are available to discuss or clarify this report and have further input into the government’s planning around DisabilityCare.

This is an excerpt from “Brain Injury Australia – NationalNDIS Consultation Report (2013)”. You can download thefull report from http://tinyurl.com/cme2jek for a PDF orhttp://tinyurl.com/cpbzlmq for a Word document. BrainInjury Australia is the peak advocacy body working ata national level to meet the needs of people with anAcquired Brain Injury, their families and carers. Call 1800272 461 or visit www.braininjuryaustralia.org.au

Er, remind me what an NDIS is?

For anyone unfamiliar with the term National Disability Insurance Scheme, it is a completely new way to provide disability services.

So what is wrong with the way things have been done in the past? Currently, it is a matter of luck on whether people receive enough funding to meet their needs. It is well known that most people with disabilities receive inadequate funding, and the levels vary greatly depending on where they live, what disability they have, and how they attained that disability.

A Productivity Commission in 2011 found that none of the States of Australia were successfully meeting the needs of people with disabilities overall, despite successes in some areas.

An NDIS aims to not just respond to crisis situations, but accurately assess needs and take a lifelong approach to providing care and support. An example of this is making suitable investments up front, such as funding for home modifications that will lead to a better quality of life.

DisabilityCare is the name of Australia’s NDIS.

DisabilityCare action so far . . .10 August 2011: The Productivity commission’s final report into disability care and support is released. An NDIS Advisory Group is also announced by the Prime Minister.

19 August 2011: The Council of Australian Governments agreed on the need for major reform of disability services in Australia through an NDIS.

26 November 2012: Australian Government released the draft NDIS Bill.

21 March 2013: The NDIS Bill is passed by Parliament.

Anticipated in the near future are:

July 2013: First stage of the NDIS in South Australia, Tasmania, the Hunter in New South Wales, and the Barwon area of Victoria.

July 2014: First stage of the NDIS in the Australian Capital Territory.


Case studies from Brain Injury Australia’s recent report provide a timely reminder of what life is like for people who have

acquired a brain injury, as well as their family and carers.

A three week national consultation resulted in 19 sessions involving a total of 235 people. This included 34 people with a brain injury and at least 28 family members and/or carers of people with a brain injury. The case studies focussed on what kind of supports are reasonable and necessary for people with ABI. These are excerpts from the report; the full report can be downloaded from the Brain Injury Australia Website.

Case studies by people with ABITransport: “I need cab fares – to go to pay

bills, to go to employment, etc. Catching a bus is too hard.

Focussed cognitive support: “I need assistance to access community (e.g. shopping, getting to the metro). I need assistance to direct me when I am shopping – e.g. to make sure that I am able to choose from amongst a variety of products.

“I need support with managing money and paying bills. If I don’t pay it on time I accrue costs, and I can’t manage it on my own”.

“I would like support to build my capacity to enable me to manage more and more of my money and other administrative tasks. This will help me (a) to find out what my capabilities are, (b) to develop and expand the range of my skills and abilities, and (c) to push the industry to develop more creative, innovation solutions”.

“I’d like to have support to enable me to go

back to school or TAFE. Due to issues with organisation skills and memory loss, I am scared that I won’t be able to cope with (a) learning in the classroom, (b) getting the assignments in on time, and so on. If I don’t cope I will go into meltdown, and everything will come to a stop”.

Social participation support: “I need assistance to have a productive social life and be able to contribute to community. I can get there on my own but I have lost the motivation to get out and do things socially. I become too tired, and feel that I have to explain certain problems or mistakes I am making”.

“I need support to go sailing. I couldn’t sail if I didn’t have this support (because I don’t have balance anymore). And sailing is my life: I have a group of friends who also sail who have stuck with me and so this is part of my social life. And my family are not close, and have not taken an interest in helping me”.

“People with ABI need support to reduce their social isolation — like groups or ‘buddies’ that can motivate you and take you to mainstream activities (e.g. learning how to surf, going for a coffee or to the movies, or shopping). This is because a lot of people don’t understand ABI. For example, they think that because I can talk and communicate, I am fine. (Some even deny that I have a brain injury). More broadly, social isolation can contribute to mental health issues and substance misuse — including the abuse of medication; and mainstream supports are often not suitable (e.g. hours are not flexible, lifeline has no idea about brain injury, etc.)”.

Independent living support: “Day-to-day support for living, a home to live in, with toilet

and shower facilities. These are necessary and reasonable all the time, every day due to my physical constraints”.

“Normally, I am fine. But first, there are episodes when I experience the impact of my ABI, and need personal care 24/7 during these times (e.g. being showered, taken to the toilet, brushing my teeth) . . . The system needs to recognise that my condition is permanent, but episodic”.

“I need support with caring for myself, going shopping, etc. I don’t want to impose on my family or be a burden on them — they have family of their own, or are living somewhere else, or the support that they can provide is too limited”.

Accommodation: “I live in my own home, and rent the front property out to Headway. I receive 20 hours of support, and my mum plays an active role in helping to pay bills, etc.. But I do my own shopping, and I live fairly independently. There was a big cost-benefit in moving out of a residential facility into my own home, but I couldn’t have done this without funded support. And I am now far more independent than I used to be”.

Specialist heathcare: “I need support to fund a physio in the community who can give me continuous help and practice in walking. Being in a wheelchair I have the capacity to walk, but I only get 6 weeks of physio a year. But with an ABI you need continuous repetition to help you undertake a task.”

Social and economic participation support: First, I have needed a ‘life-style support person’ to go back to education — someone who was

Why DisabilityCare is neededCase studies highlight the urgent need for a National Disability Insurance Scheme to help rebuild lives after a brain injury


suitably (i.e. academically) qualified to be able to support me (e.g. who knew enough about the topic). Second, I don’t have support to help me with difficult family members — e.g. when they have a mental illness themselves or they don’t understand the results of ABI, or they do understand the impact of ABI and use it to their advantage. Third, I am aiming to use my degree to start up a business that can help other people with a disability (i.e. a paraplegic employment service to produce niche furniture). . . With regard to the support I need to start up a business, this is because I want a role. I want to feel like I am achieving something in life. I need to (and I have a right to) have a purpose and to feel valued in life.

Case Studies by carers of people with ABI“My son needs support to live a normal

life —to get back into the workforce, transport training to his workplace, assistance with public transport, social activities, independent living support (which uses a personal assistant). Due to the ABI, he has short-term memory loss, and so cannot plan ahead or for himself, he has no initiative so needs prompting, he needs to repeat things over and over again to learn things, and he has seizures, he gets too tired to do anything in the afternoons, he also suffers from depression and loneliness, lack of motivation and initiative, and lack of concentration.”

“I need carers to be able to take my son out to do things. He has a cognitive impairment and so is vulnerable and needs assistance with doing things.”

“My wife and I look after our son. But, due to his ABI, his behaviour is such that

my wife can’t look after him for more than two to five hours at a time because he can become too aggressive. So at the moment we need enough support in the home, community based access, sufficient respite for us as carers, and emergency care when this is not covered by mainstream services. In the long term, we want to have fully supported 24/7 care (i.e. in a facility which is age appropriate, where all his needs are met, where he has full access to the community and his own child, where he has as much independence and control over his life as possible). We need these immediate supports in order to keep him at home and out of nursing home. We need the long-term supports so that, as we age, we can know that he will be fully cared for.”

“Our son still has seizures, so he needs to be with a carer to go on public transport or to the shops. And he needs (carers to help him with tending to the plants, and to be with him when he is using high-speed tools during sculpture. In the long-term, he would need to have support at the home, visits every day, help with transport to shopping, and someone to meet with.”

“Currently school funding for disability support (e.g. one-on-one teacher’s aide) is inadequate, so we would hope to get additional funding to supplement what the school provides. We also need innovative and flexible approaches to support (e.g. paying a university student to provide engaging support and assistance).”

“I want to be confident that if I am not there his needs will be met.”

“The current level of ABI training is insufficient (e.g. they can be extremely negative

when it comes to setting goals for my son, minutes during meetings are inaccurate, being referred by a GP to a specialist in a distant location when there is one locally, case managers who don’t understand the specific needs of people with ABI).”

“My son has both ABI and a physical disability, so we need equipment, mobility options to access everyday life, home and vehicle modifications (so he can own his own car) and technology for augmented communication and access. From a personal support perspective, he needs assistance for personal care, including feeding. We would like him to be supported for post-secondary education and open employment support, and living in his own home with other people of his choosing, and by people who respect and support his own vision for his life. These things mean that he can live his life, i.e. enabling him to have a job and income and independence.”

“My daughter (9 years old) has ABI, epilepsy, anxiety and oppositional defiant disorder. We are the primary carers, but eventually she will need a carer, ongoing support and guidance, if she will allow this.”

This is an excerpt from “Brain Injury Australia – National NDIS Consultation Report (2013)”. You can download the full report from http://tinyurl.com/cme2jek for a PDF or http://tinyurl.com/cpbzlmq for a Word document. Brain Injury Australia is the peak advocacy body working at a national level to meet the needs of people with an Acquired Brain Injury, their families and carers. Visit their site at www.braininjuryaustralia.org.au or call 1800 272 461.


Hemiplegia (paralysis of one side of the body) or hemiparesis (weakness of one side of the body) can often occur following

brain injuries, particularly strokes. These conditions can make everyday tasks extremely difficult. Here are strategies for coping with common problems due to hemiplegia and hemiparesis.

Paralysis of arms or handsIf an arm or hand is paralysed, it is important

to try to improve its function by treating it as normally as possible and not neglecting it. Place the limb in positions that were typically used before the brain injury, and place it where it can be seen. This is particularly important if the person lacks awareness of the affected limb.

One approach is to open the hand out flat and rest it, palm down, on the lap or table. Ask the physiotherapist if the hand and arm would benefit from lots of sensory stimulation, such as massaging the skin, rubbing briskly with a wet flannel, rubbing the hands together, kneading and rolling dough, etc.

Conventional wheelchairs can be very difficult to use one-handed and many people use powered wheelchairs instead. However, these are expensive, heavy and lack portability. One arm drive manual wheelchairs can overcome these problems. You could ask an OT or other healthcare professionals about availability.

Sensory problemsIf there is a sensory problem, such as inability

to feel heat, cold, pain, etc, this area of the body will be particularly vulnerable and will

need special attention. Care should be taken to ensure the affected area does not get too hot or cold, and to prevent the skin from coming into contact with things that could burn, scald, or cause other injury, such as sharp objects or rough surfaces.

Personal hygieneTeeth: Experiment with different toothpaste dispensers. If using only one hand, lay the toothbrush on its back and squeeze the toothpaste over the bristles. Alternatively, hands-free toothpaste dispensers are available.Dentures: A suction denture brush is available, working in a similarly to the suction nailbrush.Nails: A suction nailbrush is available that can be stuck onto the sink, so that it does not need to be held. The unaffected side can use this easily, and then the affected hand can be held in position by the ‘good’ hand, and the nails rubbed back and forth, across the brush. A suction nail file also works in a similar way.Toileting: Interleaved toilet tissue (as often used in pub and restaurant toilets) is easier to use, as tearing off tissue is difficult using one hand.Shaving: Use an electric shaver, preferably a rechargeable one which does not need to be plugged in during use.

Coping in the kitchenSnap-on aprons: These have a bendy plastic

waistband with a snap-fastener, avoiding the need for tying a bow behind the back.Opening cans: Adapted can openers are

available with handles that lock together with

a single squeeze, and so do not need a constant strong grip to hold them together. Electric can openers, suitable for one-handed operation, are also available.Slicing: Cutting guides are available for slicing bread and meat. These have upright pillars to hold the knife steady and make cutting safe and simple. The width of the slice can often be adjusted as necessary.Spreading: Spreading boards are available, with two slightly raised edges at right angles to each other. The slice of bread is laid next to these edges to stop it from moving during spreading.Opening jars and bottles: There are a variety of grips to choose from. Some gadgets grip the lid while you turn the container; others grip the container while you turn the lid.Cutting: Easy-grip scissors can be helpful if you need to use the opposite hand from the one that you would normally use. These open with a spring action, so very little strength is required.Peeling: ‘Rex’ peelers have broader handles than traditional peelers and require less movement at the wrist. You could also try a battery operated peeler with a contoured handle for easier grip. There are even electric peelers available that do all the work and don’t require holding. Alternatively, a grater/peeler unit is available, with spikes to hold food for conventional peeling and a separate scraper section. Vegetables are rubbed against the scraper to remove the peel. The scraper can also be used as a fine grater.Boiling: Metal handle guards can be fastened onto the side of a cooker to hold pan handles

Coping with hemiplegia & hemiparesis


TIPS foR dRESSIng

FASTENINGS: Ideally, choose clothes without fastenings, such as T-shirts, Polo shirts, casual tops, and trousers or skirts with elasticated waistbands. Zips are extremely difficult to manage with one hand and are best avoided. When dressing, it is much easier to dress the affected side first, and undress it last.

BUTTONS: It is possible to do up a button one-handed, but it takes practice. A latch hook may be useful: insert the hook through the buttonhole, latch it onto the shank of the button, and pull the button back through the hole. For buttoned shirt cuffs, stitch elastic loops next to the buttonhole, and fasten the button through the elastic rather than the hole. This allows for the hand to pass through the cuff without needing to unfasten the buttons. You could also replace buttons with Velcro. Remove the buttons and stitch them back on over the buttonholes. Stitch Velcro circles behind the buttonholes and onto the material where the buttons used to be.

SHOES: Choose shoes with Velcro fastenings, or slip-on styles. Buckles may be manageable, but check that both shoes can be fastened up. Elastic shoelaces are inexpensive, and can help to convert lace-up shoes into slip-ons by allowing extra ‘give’ across the top of the foot.

BRAS: Choose a bra with as few hooks as possible. Try bras with front fastening, or bras with no fastenings, which slip on over the head. Alternatively, the rear fastening of the bra could be adapted by attaching a piece of Velcro.

steady while their contents are being stirred. When cooking vegetables in a saucepan, it can help to place a wire chip basket, or sieve, inside the saucepan before adding the vegetables. Once cooked, the vegetables can easily be drained by lifting up the basket. This prevents the problem of needing one hand to hold the pan, and another to hold the lid, or strainer, while pouring off the excess water. The water can then be left to cool before attempting to empty the saucepan.Avoiding burns: Heatproof mats can be placed on the work surface, or adjacent to the oven, so that hot cookware can be placed onto them before being moved.Chopping, grating and mixing: Food processors, blenders and juicers can be invaluable for chopping, grating, mixing, etc. Choose a design that is easy to operate, take apart and clean. Simple mechanical choppers or electric mixers are also available which only require one-handed operation. Try a hand-held ‘stick blender’ to mix the contents of a bowl or saucepan with the press of a button.Microwaving: A microwave can be very helpful as it reduces cooking time and cooking requires minimal handling. Proper microwave cookware, which is designed to absorb less of the cooking heat, will be cooler to handle.

Eating and drinkingMoving food and objects: Trolleys are useful for transporting hot objects from one work surface, or from one room, to another. This greatly reduces the risk of accidents. One-handed trays are also available, with a handle that rises over the centre of the tray so that it can be balanced safely with one hand. These also come with an anti-slip surface.Plates: Plates with anti-spill raised edges are available. Alternatively, plate guards can be clipped onto most plates.Cutlery: A wide variety of adapted cutlery is available to make eating easier, e.g. specialist knives which enable food to be cut without requiring a fork to hold it steady.Egg cups: Try egg cups with a suction base.Non-slip matting: Special rubber matting is widely available which prevents plates, cups and other items from slipping around during use. Alternatively, a damp tea towel folded and placed underneath can also prevent hard objects from slipping on a smooth surface.

HouseworkWashing-up: Brushes which attach by suction onto the draining board are available, which allow you to clean pots one-handed. Alternatively, an automatic dishwasher can make life easier.Vacuuming: Heavy vacuum cleaners are very awkward to use with one hand. Choose a light machine with a swivel-head which can be easily manoeuvred around furniture. It is helpful to clear space before beginning the job. Hand-

held ‘Dustbuster’ vacuum cleaners, which are rechargeable, are very handy for stairs and small areas of carpet.Laundry: Automatic washing machines are preferable, as washing by hand is obviously very difficult one-handed. For drying, it is easier to hang each garment on an indoor drying rack. Once the washing is dry, place the items on a flat surface to fold them. Buy socks that are all the same so any two will make a pair rather than having to pair items up after washing.Ironing: Again, this can be difficult using one hand. Extra care needs to be taken to avoid burns, particularly if there is any loss of sensation in either hand. It may be easier to turn the ironing board around if using a different hand from that used previously. A tumble dryer and fabric conditioner, as well as a careful choice of fabric, can help to reduce the need for ironing. Large items that need folding after ironing are best laid out flat onto a table.

games and hobbiesCard games: Purpose-made holders are available to hold cards steady. A simple alternative is to hold the cards in the bristles of a new, upturned scrubbing-brush.Sports: Sports can be difficult but adaptations can often be made. Racket sports only require one hand and the use of a one arm drive wheelchair can help. Alternatively, table tennis can be played from a static position. Bowling is fun and pool or snooker can also be possible with some help to get the non-functioning arm in the right place. Games related to boules can easily be played one-handed and there are playing areas in most towns and cities.Video games: One-handed controllers are available for the Xbox, PlayStation and PC. Most games on the Nintendo Wii can be played using one hand. Joysticks are also suitable for many games and these can be attached to a table by suction pads for one-handed use.Crafts: The biggest difficulty with most hobby

activities is stabilising the components. Clamps, plasticine, non-slip matting and specialist frames can be used for needlework. A hoop that clamps onto the table is available for embroidery, as are simple threaders for sewing needles. A clamp is also available for holding a knitting needle to allow one-handed knitting.

ConclusionAlthough life with hemiplegia or hemipariesis

is inevitably difficult, there are many ways to manage the everyday practical issues. We hope these tips provide you with some useful ideas for yourself, a friend or relative. Remember, always ensure that the techniques you are using are safe, and if you have any questions, problems or concerns, consult an occupational therapist.

If possible, try items out before making expensive purchases, as some things will work better for some people than others. Also, some companies can charge a lot of money for items when something equally effective can often be found very cheaply. Always be wary of buying expensive equipment, especially on impulse.

If possible, it is advisable to consult an OT about equipment that would be most suitable for you. They may also be able to help you obtain any items which you find difficult to locate.

* These strategies should not replace specialist advice and support. A physiotherapist and/or occupational therapist can advise on ways to manage and improve the ability to use the parts of the body that are affected, and any specialist equipment that may be useful. If you do not have access to an OT then you ask your GP or local Brain Injury Association about a referral.

This article is reproduced from www.headway.org.uk with the permission of Headway – the brain injury association. You can send an email to [email protected] to discuss any issues raised. /Visit the website for great resources available for free download.


Our ability to see and to understand what we see relies not only on our eyes, but on many parts of our brain. Damage to a

particular part of the brain or the optic nerves (the nerves that connect the eyes to the brain) can affect our vision in many different ways.

Some possible problems include partial vision, seeing double, hazy or blurred vision, an inability to recognise or interpret what you see, being able to see only one side of your surroundings, tunnel vision (as if looking down a tunnel), trouble seeing in dim or glary light.

Hemianopia, visual neglect and visual agnosia are three common problems that may occur after a brain injury, stroke or brain tumour.

HemianopiaHemianopia (hemi-an-o-pia) is a type of

blindness. It affects the same half of each eye, either the left half or the right half ; or a person may have a hemianopia of one eye only dependent on the lesion site. It occurs as a result of damage to the connections and wiring of the visual system of the brain.

In medical terms, the person loses half (sometimes less) of their “visual field”. It’s like losing a wedge of sight or a portion of your vision. People with hemianopia can be affected in various ways, and in varying degrees; they may bump into things on one side, knock over drinks on one side and can be startled by objects that “suddenly appear” on their affected side. Reading can be difficult, as one side of the page

may be unseen unless the head is turned.Support strategies: Usually the person has

an understanding or insight into their sight difficulty, and some people learn to compensate well for these difficulties. You can help a great deal by drawing attention to objects or activities on the affected (non-seeing) side.

Approach the person from the non-seeing side, or encourage the person to turn their head to you when talking to them.

Reading and writing are easier if there is a clear edge down the affected side of the page — a ruled black or red line or a brightly coloured strip of cardboard might help to direct attention to the start or end of a line of text.

Compensation strategies include teaching the person to turn their head to scan the environment, and place objects within sight.

If the neurological condition advances, or the brain damage is significant, you may need to approach your family member only on their non-affected side. Assist when needed with activities such as dressing on their affected side.

Visual neglectWhile hemianopia is a sensory loss of vision

to one side, visual neglect is a loss of attention to one side of the body e.g. a person with visual neglect may not shave one side of their face or not eat the food on one side of the plate.

It is a spatial inattention disorder, usually caused by damage to the parietal lobe of the brain, which deals with spatial awareness and

Vision problemsHow a brain injury can affect a person’s vision and some strategies and therapies to assist

DisabilityCare support in QldLaunched in September 2012, “Your Life Your Choice” provides the framework for how self-directed support operates in Queensland. Self-directed support is a funding approach that enables people with a disability and their families to have greater choice and control over the disability services they receive. It is a key part of the planned National Disability Insurance Scheme, DisabilityCare.

How does it work?A person with a disability can choose between services that are delivered through non-government service providers in the traditional way, or choose to self-direct their supports using funding and resources to plan, purchase and select supports that best suit their needs.

Initially self-directed support will be organised by a host provider; to find out which organisations are endorsed as host providers, please visit the link at the end of this article.

Who can self direct their support?Queenslanders with a disability who receive ongoing individualised funding from Disability Services and support needs that are considered stable can choose to self-direct their supports with a host provider.

For more information, contact your local Disability and Community Service Centre or visit http://www.communities.qld.gov.au/disability/key-projects/your-life-your-choice for links to information packs and more.

Prevention better than cureA Traumatic Brain Injury can result from a wide range of accidents. Here is a checklist to keep you and your family safer:•Wearaseatbelteverytimeyoudriveorrideinacar•Buckleyourchildintoachildsafetyseatuntiltheycan

fit a seat belt safely•Wearahelmet,andmakesureyourchildrenwear

helmets, for riding a bike horse, or motorcycle•Helmetsshouldalsobeusedforcontactsportssuch

as football or ice hockey, and using in-line skates, skateboards, skis or snowboards

•Useastep-stooltoreachhighshelves•Installhandrailsonstairways•Installwindowguardstokeepyoungchildrenfrom

falling out of open windows and use safety gates at the top and bottom of stairs

•Finally,makesurethesurfaceonyourchild’splayground is made of shock-absorbing material (e.g. hardwood mulch, sand, rubber matting).


the perception of sensations — the person may not have an insight into the problem.

Support strategies: It is more difficult to overcome the effects of visual neglect because the person’s ability to perceive that part of their world has been damaged. They usually need persistent prompting to attend to all things on their affected side. The person may sit slumped towards their good side. With permission, encourage and assist them to sit up straight.

Visual agnosiaVisual agnosia is when someone is unable

to recognise things. While their eyes still “see” the world, their brain is not able to interpret the information sent from the eyes. It is a processing problem.

A person may look at a cup but have no idea what it is. If they pick it up however, their fingers may recognise it. They may have trouble identifying objects in a cluttered pantry or on a supermarket shelf. For some, pictures or faces may become meaningless or unrecognisable.

Visual agnosia can be very frightening because the person’s world no longer makes sense to them. Activities we take for granted like moving through busy environments, crossing the road or catching public transport may become terrifying to them.

Support strategies: You can help – recognise the problem and reassure the person they are not going mad! You can gradually help them to recognise objects again. Encourage the use of

other senses, such as sound and touch, to make sense of visual information. When moving about, encourage the person to set orientation landmarks that are meaningful to them.

Don’t always assume they are coping, especially in busy environments. Ask if they would like physical guidance and then offer your arm — don’t take theirs — and link arms if they need a stronger grip.

Therapies: Ideally, your family member will work through these problems with a rehabilitation team appointed at the time of their diagnosis or assessment. Rehabilitation therapists can develop helpful strategies to manage many vision problems. For example, an occupational therapist can teach people how to use what vision they have to scan the environment, enabling safety and independence with tasks such as food preparation and dressing. A person can also be taught how to read labels and recognise signs more effectively.

Loss of vision can affect a person’s ability to maintain their balance and gait. A physiotherapist can teach them how to use their remaining vision to scan the environment, without losing their balance.

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. Visit their site at www.brainlink.org.au

The incredible human brain

Unlesstherearelifeformsmoreevolvedthanusin the depths of space, the brain holds first prize as the most complex object in the universe – an amazingly intricate system that we have been unable to duplicate, despite our incredible technological advances. And we still aren’t sure exactly how it works!

Every movement, thought, sensation, and emotion that makes up our experience of being humans involves several thousand kilometres of interconnected nerve cells. Our brain and spinal cord contain ten thousand distinct varieties of neurons, trillions of synaptic connections, a hundred known chemical regulating agents, and axons ranging from a few microns to well over 45 cm in length.

The average number of neurons in the brain is 100 billion, yet the brain typically only takes up 2% of our body weight. The actual weight comprises about 80% brain tissue, 10% blood and 10% cerebrospinal fluid.

If we lined up our nerve fibres they would stretch for 180 000 km. The number of synapses is around 0.15 quadrillion, so it’s not so bad that around 85 000 neocortical neurons are lost every day.

This complexity is why a brain injury can have such wide-ranging effects on our movements, thoughts, sensations and emotions. Causes include accidents, a stroke, alcohol or drug abuse, tumours, poisoning, infection and disease, near drowning, haemorrhage, AIDS, and disorders such as Parkinson’s disease, Multiple Sclerosis, and Alzheimer’s disease.

Even a mild injury can result in a serious disability that will interfere with a person’s daily functioning and personal activities for the rest of their life. While the outcome of the injury depends largely on the nature and severity of the injury itself, appropriate treatment will play a vital role in determining the level of recovery.


Confusion

Normally, people use their planning and organising skills to work their way through confusion. However, because Acquired Brain Injury often results in some loss of these skills, it may be difficult to deal with confusion. Confusion usually comes about through:•Unrealisticself-expectationse.g.memoryof

achievement is inconsistent with current ability•Inabilitytorecognisethatadisabilityexists•Othershavingtoohighanexpectation•Attemptstoachievetoomuchatonce•Interruptions,noise,clutterorvisualdistractions•Toomanyinstructionsbeinggivenattheonetime.

Carers and family members can go a long way to reducing the impact of these factors. Gently support the person with a brain injury to come to terms with their abilities and deficits. Allow room for them to discover these by making mistakes as well.

Make sure tasks and information are in bite-size pieces, with processes broken down into achievable steps. Write these on a whiteboard, or at least a piece of paper.

Keep the home environment tidy and quiet. Remember that places like supermarkets may be overwhelming with all their visual and auditory stimulation.

A brain injury often leads to fatigue and limited amounts of energy available for the day. Daily tasks should be limited to avoid confusion and becoming too tired.

Night owl or a morning person?We’ve long known that many people fall broadly into these two categories. Research indicates that there will be better times to undertake certain kinds of tasks.

If you have acquired a brain injury, you have probably discovered the benefits of writing down a daily plan of activities. If you fit into the ‘morning person’ or ‘night owl’ categories, try scheduling your activities around these suggested times and see if you notice any improvement. Remember not to overdo it though, and take all the rest breaks you need to avoid fatigue!

Mopy Dick by Rick Bowie

An English musical comedy team from the late 1950s, Flanders and Swan, sang a song about a whale called “Mopy Dick”.

The first lines of the song go: The bottle nosed whale is a furlong long and likewise wise but headstrong strong And he sings this very lugubrious song As he sails through the great Arctic Ocean Blue.

Maybe its because of my brain injury that the words “headstrong strong” have stayed with me for many years.

I’ve never really thought about being head strong. I think it probably is a great way to be, even though it can also be a way of describing an unruly child (or even stubborn adult!) as well!

I’ve always wanted my children to be strong enough to stand up for the right to “know” and “believe” within their thoughts, that they feel good about themselves and are content with the direction in which their lives are going.

Our language is overladen with negative words — words which limit us in so many ways. How many aspects of our lives are governed by words like “can’t”, “don’t” and “won’t”, as well as “should” and “ought”?

I find that this kind of word is used a lot when talking to me, or about me. As I remember, in relation to my Acquired Brain Injury, it started when I wandered away from the ward (“you

can’t go out there!”) and was continued by many of the well-meaning medical staff — “You won’t be able to work again!” “You shouldn’t push yourself so hard to get better!” “You can’t set goals to get better!”

The list goes on. I realise, of course, that many of these comments were offered to protect me from myself, and the targets I set myself. At this stage in my healing, I am grateful for the concern. However, I experienced it as shackles.

Words like this weaken us considerably, and can prevent us from growing into the men and women we are called to be. They can easily sabotage any sense of fulfilment in our lives.

Part of the problem is that these words also come up in our negative “self-talk”, and we use them to wallop ourselves into accepting the lesser instead of the more! The result is that our lives become progressively poorer.

These words are like a kind of automatic reminder service on our phones, and they tend to be generated by some deep beliefs we have about ourselves.

Many of these beliefs are left-over material from growing up. “Always do what your father tells you.” “Don’t walk over the road without daddy being with you.” “No, you can’t go swimming in the river! It’s too dangerous and you never know what is under the water.” And so on.


Better to be thought a fool...

As the saying goes, “It is better to be silent and be thought a fool than to open your mouth and remove all doubt.” Since my brain injury, I’ve been having a prolonged battle with mouth. It was quite a while before I realised I was usually prattling on and everyone was making excuses to get away, or showing signs of boredom.

The problem is that nowadays I just tend to go on and on. I provide too much detail on topics other people aren’t really interested in. To top it off, my sluggish self-awareness clicks in too late and the damage is already done. I tried staying silent but then people thought I was a mute and avoided me anyway!

Still I am slowly getting there, or so my family tell me. They are slowly curbing the worse aspects of my runaway mouth by gently telling me when I’ve gone on for too long. I’m also trying ‘active listening’ now. Instead of staying silent, I ask the other person questions so that I don’t appear to be a mute. This has helped a lot, and in some ways I didn’t anticipate. My family haven’t liked the self-centred tendencies I’ve picked up since my injury, and active listening goes some way to fighting this egocentricity. If you haven’t got a brain injury, please appreciate your brain and your social skills. You truly don’t know what you had until it is gone. – anonymous

It needn’t be like this you know.I want you to notice what this voice, or these

voices are like. Think of one of these negative inner voices now, and become aware of where it is located in space. Is it in front of you? Or behind you? Is it to your left? Or to your right?

Simply become aware of how it speaks to you. How does it sound? What are the qualities of the voice? Is it fast speech or slow? Is it a deep voice? How loud is it?

By becoming aware of these qualities you can discover a way to de-power them. These qualities (whether the voice is high or low, quick or slow, soft or loud and so on) are what makes the pattern powerful for you. They are the glue which, together, keep them stuck inside our heads.

The fun part comes next when we interrupt the pattern and sabotage it – melting or weakening the glue, in essence.

Have a go at this: listen to one of your inner voices which is offering a mild criticism. One of them for me happens when I put off going for a walk: “I’m just lazy, that’s my problem!”

Now listen to it again and turn the volume right down so you can hardly hear it.

Listen again, and pretend you are a DJ with the voice on a vinyl record. Manipulate the disc in the way they do – forward and back, forward

and back, so you can’t even hear the meaning of the message any more.

Now try to listen to the voice again. Is it the same as before? I doubt it.

You could play the tape backwards. That would make a difference to the meaning, wouldn’t it!

There are many ways you can manipulate the voices inside your head. A mentor of mine once said that he has a veritable zoo in his head. They used to be human voices, now they moo and chirp and warble . . . and no, he didn’t make any of them bark. It reminded him too much of the dog over the back fence!

Some of the voices you could get to talk to you with a positive message, and an alluring voice.

Enjoy playing with your voices. If you play around with them too much though, don’t be surprised when some of them even disappear.

Our inner voices can be changed easily and quickly. You might even discover more ways than I’ve written about. When we interrupt their pattern and change their qualities by making them quicker or slower, or louder or softer, our brain finds itself discovering more resources, and we can feel much better about ourselves, with more choices in our lives.

What would it be like if our main thoughts were about what I can do, what I am doing and what I will do!


I liken my brain injury to an earthquake in my brain. Just as in an earthquake, roads and bridges and railway lines are

broken and you can’t get to where you want to go — so after a brain injury the brain wants to find/ store/ process information and it can’t use the normal pathways, because they are not there — they have been broken.Before the accident, I saw and heard the world as most people do. I was able to think and process information at a rate that fitted into my world. After this ‘blow’, my brain’s storage system and filing capacity was affected, and my perceived world was very different and also very difficult to deal with for some time. At first, it was almost as if I was not connected to the world — it was all happening out there and I was a spectator — because my brain was having difficulty processing information. Information

was coming in, but because the connections in my brain had been broken, the brain was trying to fit incoming information into what was left.

Personal difficultiesMemory and language difficulties were all really difficult for me to deal with – but in addition, I didn’t look any different to other people and so no one could understand why I was reacting and behaving differently. If those people could have seen inside my brain and seen the limited capacity it was using at the time, they certainly would have understood, and accordingly made adaptations and reduced their expectations. The hardest situation for me to deal with, was not being able to explain myself, when I knew others were impatient with me, or thought that I was ‘putting it on’. I was powerless to tell them what was going on, because I was finding

it hard to understand myself, and make sense of my world, and operate in this strange, new world around me. Not only was I dealing with all of this – but my world now looked different, but also sounded different to before.

Visual problemsI had difficulty coping with bright light – sunlight, and also at night initially with oncoming car lights, when being driven in the car. I had to wear sunglasses at night in the car. During the day I had to sit where there was no glare from the sun. This difficulty has continued for me, but not quite to the same degree. I had to use a black pen initially, because even a blue pen was too bright for me to use. I had difficulty dealing with multiple visual inputs. I couldn’t cope with the movement of people and the number of inputs at crowded places like a show or shopping centre. These

My world after a brain injuryAnn Wood talks about the massive disruption a brain injury caused in her life


places would make me feel so stressed I just had to get out of them. To stay there, I eventually worked out, I had to focus on something that was plain – in my case, I focussed on my husband’s back when he was wearing a plain jumper or T-shirt. This meant of course that I had to walk behind him.I had difficulty with making sense of visual information. The information was not steady before me— it ‘swam’. Initially reading was impossible because all of the words on the page moved around — I had to use a ruler or a bookmark to be able to focus on a line.It was impossible to make sense of the information on the petrol bowser. Which figures were litres? Which were dollars? I couldn’t work it out. I just had to go in and wait until they told me the cost.Finding my cards in my purse was a nightmare. One example was trying to locate my Medicare card when I was asked for it at the doctor’s rooms. I worked it out eventually on future visits — I had to find my card and take it out before I went in!If anyone wore striped clothing, I could not look at them because the visual disturbance was too great. I had to look at something plain like a plain carpet, if I was to be able to listen to what they were saying to me.

Hearing issuesI also had difficulty dealing with multiple auditory inputs. I could not go to restaurants without feeling discomfort at all the conversations going on around me. I had to go out to a quiet place several times during the dinner to cope with the stress it caused me. I had difficulty even being out socially with a group of friends, because I used to get tired from the concentration of following conversations for any length of time, and dealing with multiple conversations.

Short-term memoryMy short-term memory was affected. I had to write things down to remember. I could not store more than one piece of information, at first. My brain was slowly processing the first piece of information, and until that was finally processed and stored, I could not take in any more.I had to work hard to recall where I had parked the car when I did some shopping. I had to work out a strategy for this. It is very hard when you try and recall and there is nothing there. My eventual strategy was to turn around as I left the car, and see what it would look like when I returned.It was also evident that my long-term memory had been affected – I could not recall events from the past, or places I had been to.

Language problemsFour months after the injury, I remember being asked in a test what a vein was. I remember

looking at where the vein was in my arm, and sensing that the word vein was way out there and I couldn’t get to it. I could not tell the person giving the test anything about a vein. I can tell you now, though – 13 years later. Since the injury, my brain has made new connections to that word and concept. Although I can tell you now what a vein is, the pathway is not as straight to that meaning, and consequently I may take more time and effort to get to the meaning than before. I took a long time to process information and was very tired. There were times when I could no longer process any information and my brain would stall – I called it a brain jam. I could not listen to others for long periods of time. I found it difficult to be in small groups and keep up with their conversation.There were times when speaking, I would go completely blank in a conversation and not be able to get back to where I was at. It was just completely gone. It was hard for me to change from one topic to another. In fact often I was left behind in a conversation. This is an example from home. I would suddenly hear the phrase that my family would say to me – “earth to mum”. It was probably not the first time they had said it. They had been talking to me but realised that I wasn’t ‘with them’. I couldn’t follow at all if people were talking too quickly for me.

How did I cope?All of these difficulties, caused by the changes to my brain, and the consequent change in my perceived world, were difficult to fathom and cope with at first. Then when I came to realise how slow I was, and feel how embarrassing it was, I grieved for my former capable self.I found it very hurtful when people couldn’t understand why I wasn’t functioning as I normally did. I eventually realised that it was too hard to explain it to others. No matter how I tried, others just could not understand that although I, the perceived, physical Ann Wood, was the same, there had been drastic changes to the unseen brain function of Ann Wood, which caused different reactions and behaviours.Eventually, I developed strategies to deal with my difficulties. I also was pushed into doing things that were hard and humiliating for me. But doing those things helped my brain to redevelop, and eventually I realised that I could do things like other people — that I was not on the scrap heap.I eventually learned to like the new me. I now have a depth of understanding of other people with disabilities. I have a true empathy and a desire then to help others — not just with head knowledge but from my own personal experience.

Brain twistersEven without a brain injury, we can sometimes find our brains tripping over obstacles. Try counting every “ F” in the following text:

FINISHED FILES ARE THE RESULT OF YEARS OF SCIENTIFIC STUDY COMBINED WITH THE EXPERIENCE OF YEARS... Sohowmanydidyoumanagetocount?Unlessyouare an absolute genius, you will not have counted six. Don’t believe me? Go back and count again!

The reason our brain trips over this statement is that the majority of us will find that our brain has trouble processing “of”.

Counting three on your first try is normal, while four is quite rare. If you got six on your first try, consider yourself up there with Einstein and give yourself a pat on the brain.

Gud speling?Duhz speling reallie mattuh? Olny srmat poelpe can raed tihs. I cdnuolt blveiee taht I cluod aulaclty uesdnatnrd waht I was rdanieg. The phaonmneal pweor of the hmuan mnid, aoccdrnig to a rscheearch at CmabrigdeUinervtisy,itdeosn’tmttaerinwahtoredrthe ltteers in a wrod are, the olny iprmoatnt tihng is taht the frist and lsat ltteers be in the rghit pclae. The rset can be a taotl mses and you can sitll raed it wouthit a porbelm.

Tihs is bcuseae the huamn mnid deos not raed ervey lteter by istlef, but the wrod as a wlohe. Amzanig huh? Yaeh, and I tghuhot slpeling was ipmorantt!

Proof readingBelow is a well known saying. See how long it takes you to work out what is wrong with the sentence. . .

How did you go? Don’t be surprised if it took a while to work it out, or if you couldn’t find the mistake at all. The word “the” is repeated twice, but our brain is tricked into not noticing this double up. Some professional proof readers actually say the words in a sentence out loud, so that hearing themselves repeat the word twice will increase the chance of our brain hearing mistakes like this.


At the age of 16 (18 years ago) I was involved in a motorcycle accident that resulted in severe brain injury. After four

weeks in a coma, I was unable to walk, talk, and my body was unable to control autonomic functions such as my body temperature or hunger awareness, amongst other things.

The power of positive thinkingLike a lot of people with acquired brain injury, I experienced loss of friendships, short-term memory and concentration problems, fatigue, epilepsy and suicidal thoughts. I am extremely fortunate to have had one very significant person on my side throughout all of this – my mother. She never stopped believing in me, and believing I was capable of achieving more than the doctors were telling us. I can’t possibly overestimate the value of having someone believe in you. Believing in someone does not mean pushing them to do the things you want them to do, but it is listening to their issues, an encouraging word which helps a person have hope, and support to achieve seemingly impossible goals. As someone who was told they would never walk, talk, or hold down a job, I hold a strong belief that the power of the mind and the power of hope can inspire a person to achieve their highest goals.

How to become ‘normal’ again?In hospital the focus was on rehabilitation and healing. After getting out of hospital, the

goal changed. I wanted to be ‘normal’. This was the hardest part because I soon realised that my friends were no longer my friends, I couldn’t remember how to get around the town I grew up in, and fatigue meant I couldn’t do much for long periods. After my mother found some suicidal poetry I had written, she went to my GP for help. He recommended a psychologist, Dr Richard Wheeler from New Zealand, who was instrumental in helping me with guided meditation and visualisation healing techniques. This was quite empowering and enabled me to turn my life around.

Setting achievable goalsOne of the first steps to help with my memory and concentration was attending an introductory computer course which was developed specifically for people with acquired brain injury. The course was held over 12 weeks, just a couple of hours a day, and this assisted me in not only learning computer skills, but the achievement of completing the course helped my self esteem, and I saw an improvement in my concentration and memory.

Study and workFour years after my accident I applied to study a diploma of Beauty Therapy, and 14 months later I began working as a Beauty Therapist. Five years after gaining my Diploma I did part of an Associate Diploma in Business Management, and I am currently at university full-time, studying Rehabilitation Counselling

and working as a support worker for Synapse. As someone who does not have any obvious physical impairment, it is difficult for people to even consider the possibility of an invisible disability such as brain injury, and the associated difficulties with learning.

Using resourcesIf you are negotiating the thought of studying, or are studying, never be ashamed to ask for help. Most universities have a Disability Support and Services division which will help adjust the system to your needs. Examples of this are things like planning around your fatigue. By the afternoon I am usually not at my peak condition, so the university has arranged for me to sit my exams in the morning. Sometimes this means sitting the exam before my fellow students, and I need to sign a Statutory Declaration which states that I will not tell any of the other students what is in the exam. In my second year of University I had to take intensive medication for six months and this made my concentration even worse, so the University also arranged for me to sit exams in a room on my own. These are just a few of the services available to assist in achieving goals, but there are many more if you ask.To summarise, if you keep organised, practise using repetition and ‘tricks’ to help you remember, and use the resources available to you, you may discover that with hard work you too can achieve your goals.

Nicole

Travel tips for the post ABI journey


A brief history of the brainA mix of nonsense, occasional accuracy and the downright bizarre

From mere stuffing for the skull to the most complex system in the known universe, our insights into our own minds

have been riddled with mistakes, guesswork and experiments.

Mere stuffing for the head?Early Egyptian views on the brain saw it as a

form of cranial stuffing. The brain was removed when preparing mummies, as they thought the heart was the seat of intelligence and essence of life itself. However, an ancient Egyptian record does contain the first written account of the anatomy of the brain. It documents 26 cases of brain injury and treatment recommendations, and describes the cranial suture, the meninges (the external surface of the brain) and cerebro-spinal fluid.

Beware of greeks bearing ideasAlcmaeon, an early Greek physician,

conducted the first recorded dissection of the brain. He believed that the brain was the central organ of sensation and thought, but unfortunately this idea did not catch on. People preferred Aristotle’s belief that the brain only cools blood from the heart, leaving the heart as the seat of the soul still. He did get some things right though — Aristotle correctly believed that the processes involved in short-term memory differ distinctly from those for long-term memory.

The four humours (not a comedy group)Galen was a physician to Roman gladiators, and had plenty of opportunities to see inside human bodies after the fights. He believed that a person’s temperament and body functions were directly affected by the balance of “humours”. For example, excess of black bile

caused a melancholy temperament, while too much blood made someone extroverted. He did have some accurate ideas as he believed that memory, emotions and the senses were located in the ventricles of the brain.

Galen’s theory of humours was the dominant theory for more than twelve hundred years. The Catholic Church’s bans during the Middle Ages on dissection helped, as this prevented any scientific exploration of the brain. Primitive brain surgery was performed by enterprising barbers who offered to remove the “stone of madness” from the skulls of the mentally ill.

Post-renaissanceFollowing the Renaissance and the

Reformation, the church lost much of its power which allowed dissection, free thought and the development of the scientific approach. Renee Descartes, the French philosopher, claimed that the nerves are filled with “animal spirits” that carry motor and sensory information to the ventricles of the brain, much in the same way that hydraulic fluid travels through machines.

Lumps and bumps on the headStrange ideas with little basis in fact

continued to emerge. Phrenology was invented by Franz Joseph Gall in the 19th century. He believed the brain had 31 personality organs, each with a specific mental function. Gall felt the heads of people from the extremes of society such as criminals or clergymen. He concluded that various lumps on the head could determine the personality and integrity of everyone. At the height of the phrenology craze, it was suggested that politicians be chosen based on the shape of their skulls.

Evolution of the brainCharles Darwin met with much resistance

from the churches and the establishment, but played a major role in studies of the brain.

Huxley was a 19th Century biologist and disciple of Charles Darwin who argued that the mind was simply a result of events in the brain. This view was reinforced by the steady expansion of knowledge about the functions of the human brain.

In the 19th century no one knew exactly how the brain carried out such functions as memory, emotion and perception, so metaphysical theories continued to flourish. But better technology and rigorous study of the brain during the 20th century made it increasingly clear that all components of the mind have their origins in the brain.

Body, soul and mindThe debate about the nature of the mind

is relevant to the development of artificial intelligence. If the mind is indeed a thing separate from or higher than the functioning of the brain, then presumably it will not be possible for any machine, no matter how sophisticated, to duplicate it. However, if the mind is no more than the all the functions of the brain, then it would be theoretically possible to create a machine with a mind.

Perhaps we do have an identity and consciousness that exists apart from our body, but is one of the great mysteries of life that won’t be definitively answered until that final day ...


In addition to the medical consequences arising from acquiring a brain injury, a person with brain injury and their family

may be confronted with a variety of legal issues. Because every person’s situation is unique, and because the law is different in each State, it is important to consult a solicitor to obtain legal advice that relates to your particular circumstances. The following is a general guide to the legal issues surrounding acquired brain injury. Please note that this fact sheet is relevant to Queensland. For accurate legal guidelines in other areas, please contact your local Brain Injury Association.

All Australians have the right to make decisions about their personal, financial and health-related affairs if they are over 18 years of age and are mentally able to understand the nature of, and foresee the effect of, a particular decision. They must also be able to do so freely and voluntarily and be able to communicate that decision in some way.

If, as a result of a brain injury, a person has lost the capacity to make some or all decisions

for themselves, there are some important legal considerations of which they, family members and close friends must be aware.

Legislation, terminology and processes regarding substitute decision making in Australia, may vary between States. Readers are advised to consult the Brain Injury Association of their particular State to clarify local variations. However, the general philosophies within Australia are consistent with the following sections.

APPoInTIng SoMEonE ELSE To MAKE dECISIonS

Power of AttorneyA Power of Attorney is a document that

appoints someone to act as an agent on your behalf. This may be required if for some reason you are not going to be able to act personally (e.g. being overseas).

A General Power of Attorney unfortunately has limitations as a device for the future planning of our affairs. If you were to incur some illness or injury that deprived you of the capacity to manage your financial affairs,

this type of Power of Attorney is not of much assistance as it is automatically revoked because of your incapacity to give instructions to the Attorney.

An Enduring Power of Attorney continues in force after the principal has become mentally incapable of understanding the nature and effect of decisions about a financial matter or a personal matter as the case may be. The appointment of an Attorney under the Enduring Power of Attorney must be made while the principal is still capable of understanding the nature and effect of the document.

All States have Guardianship Tribunals with power to appoint a guardian (for personal matters) or an administrator (for financial matters). All have requirements about the adult having impaired capacity and for there to be a need for decisions to be made on the adults behalf.

Medical directives and AttorneysOne of the greatest challenges to assisted

decision making is the question of what happens if a person loses capacity and there are no prior

Substitute decision making


arrangements about health care. All States appear to agree on the common principles of this issue but terminology, and the extent of directions that can be given vary significantly.

For up-to-date information relating to a particular State, contact your local Brain Injury Association.

A Statutory Health Attorney in Queensland is someone close to the adult who can give consent to health care, where there is no enduring attorney or enduring guardian, or guardian appointed by the tribunal. Formal appointment is not necessary in some States, since their authority comes from their relationship to the patient with impaired capacity.

An Advance Health Directive enables an adult to make arrangements regarding the type of future health care they desire (or do not desire) should they become incapable of making decisions. An Advance Health Directive may also include the name of an appointed person to assist with

determining the principal’s wishes. However, an Advance Health Directive can only be made by a person while they have the mental capacity to do so and comes into effect only after the person has lost that capacity.

A “Ulysses Agreement” enables a person with an episodic mental illness to give directions (including the use of restraint) so that a trusted person or persons can arrange for psychiatric treatment when specified symptoms or behaviour become apparent. Where an Advance Health Directive conflicts with the type of treatment that can be carried out under the Mental Health Act, the terms of the Advance Health Directive must be followed as closely as is possible.

InTERSTATE RECognITIonAn Enduring Power of Attorney or Enduring

Guardianship document made in another State is recognised in Queensland. This means that if an adult with impaired capacity moves to Queensland, their enduring attorney or enduring guardian will be able to continue to act for them. All other States are currently considering changing their laws to recognise the authority of enduring attorneys or enduring guardians from another State.

This information was published thanks to Shine Lawyers Brisbane. If you would like to contact them for more information, call their freecall number on 13 11 99 or contact Shine Lawyers.

Auditory agnosiaA brain injury can damage both mechanical and neurologic processes and result in a variety of hearing difficulties.

Auditory agnosia is impaired recognition of nonverbal sounds but intact language function. This rare outcome is normally from damage to the temporal-parietal region of the brain which interferes with the cognitive process of hearing. There may be an inability to understand spoken language while the ability to speak is preserved. Auditory agnosia often gradually resolves itself over time.

If you are experiencing auditory problems, see your doctor, as there may be a treatable medical cause. A referral may be needed to have your hearing checked by an audiologist (hearing scientist) or you may be referred to an ENT (ear nose throat) specialist. Some audiologists run specialist clinics to help manage some conditions and they fit hearing aids and/or therapeutic noise generators if needed.

There are practical steps you can take to lessen many hearing problems:•Avoidnoisyenvironmentswherepossible•Tellothersofyourdifficulty•Usegentlemusicor“whitenoise”recordingsto

cover constant noise if you experience tinnitus•Trytosleepwellandavoidstressfulsituations•Cutdownonsaltifyourprobleminvolvesfluid

pressure in the ear•Stopusingdrugssuchascoffee,cigarettes

and alcohol.


Kristy’s accident in 1990 transformed a bright, energetic, articulate and outgoing young lady into someone who was trapped

in a body that no longer worked for her. She even lost her ability to speak. Over the next five and a half years until she died, I could only imagine but never truly comprehend the horror of what this must have been like for her.

If her accident had occurred 10 to 15 years ago, if she had even survived Kristy would no doubt have been placed in a nursing home with little chance of doing anything other than existing in what would most likely have been termed as a persistent vegetative state. Because of the emergence and existence of assistive technology and the realisation that many persons, like Kristy, are “locked in” – her life after her brain injury was not merely an existence – it was lived and it was lived well and to its fullest potential.

A new voiceKristy’s life every day showed time and time

again what can be done with determination, strength, courage and trial and error with assistive technology devices and strategies. Even though Kristy was unable to use her voice to speak to us, she said over and over again to us through her actions: “Give me a chance. . . meet me more than half-way and I will show you what can be done. I will show you what works and what needs improvement. I will show you what is possible for those hopes, dreams and

goals considered impossible. I will help the non-believers believe and will show those who continue to search for solutions where and how to find answers. I will prove to you that with imagination and lots of very hard work, nothing is impossible.”

Using technologyKristy taught us all that you do not have to

be a physically able, speaking person in order to be intelligent. She demonstrated to all of us that we must concentrate on a person’s ability, not their disability. Through the use of assistive technology, Kristy was able to return to high school and graduate with honors – even though her death came before her long awaited graduation day. Kristy amazed educators by taking the same tests, exams, and end-of-grade testing that non-disabled students took, and many times outscored the majority of students. She taught her fellow non-disabled students to be more tolerant of those who are different, to believe in themselves, and to cherish life as very precious.

Kristy learned to manoeuver a power wheelchair, she enjoyed recreational activities such as shopping, swimming, camping, horseback riding, rock concerts and slow dancing for 41 seconds at her junior prom – all through the use of assistive technology. Kristy also did things that she enjoyed at home through the use of assistive technology such as cooking, baking, playing with her cats and her dog, and controlling her environment (turning

on/off her TV, stereo, VCR, lights, ceiling fan, etc). Assistive technology helped her share her love and her wonderful sense of humour with those that took the time to learn how to communicate and interact with her.

Trying to find meaning after deathAs her mother, I have grieved deeply since

her death. I have no doubt that I will continue to grieve for a long time to come, if not for the remainder of my life. Kristy was my strength and determination. I now search for my path in life without her. There were many days in the months after her death when I struggled with why she survived the accident to then lose her life five and a half years later. What lesson of life was I supposed to learn through this journey? On bad days, I must admit, the answer often eluded me. But on those days when things look clearer, I realize that had Kristy not survived her accident, there are many, many people whose lives she would have not touched and that would have been a bigger tragedy.

Years ago, while Kristy remained in a five month long coma, I cross-stitched a phrase for my brave beautiful daughter. I think it puts into words what Kristy lived in her all too short twenty-one year life. . . “Kristy, if you can dream it, you can do it.”

Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from www.lapublishing.com/blog

If you can dream it you can do itA life lived to its fullest despite locked-in syndrome


loads of fun! a little bit rude, It’s irreverent,



Your family is probably not exactly the same as it was before the injury. However, your family life can still be pleasant; it will

just be different. Here are some common changes, and what you can do to help adjust to them.

Changing rolesYou may not have thought about it before the

injury, but everybody in your family probably had a special role that they filled. Some worked and earned money, some took care of the house, and some made financial decisions. Other roles may have been more emotional in nature. For example, someone may have been the person who made everyone else laugh in hard times. Someone else may have been the “rock” in the family, who everybody turned to in times of trouble.

It’s likely the injury has changed a lot of these roles. Your family member who was injured may no longer be able to fill the same roles. Other family members may try to take over those roles. Many times this leads to role strain, which means that each person in the family is trying to fill too many roles.

Family members can become overwhelmed and can become sick, either physically or mentally.

What to do about changing roles: Accept that roles must change after the injury. Get your whole family together. Discuss what needs to be done and how things can be divided up. Be sure to involve your injured family member in

the conversation, and have them take on some responsibilities. They need to continue to make a positive contribution to the family.

Problems communicating with each other

Things have probably been so hectic since the injury that there is very little time to talk to each other. Often it seems that everything is about the injury now, and family members may not know what else is going on in each others’ lives. Everyone may have similar feelings about the injury and what has happened, but they may feel alone in these feelings. Some family members may feel that it’s not okay to talk about the injury. Even small children in the family will have feelings about what has happened and they need to feel understood. Sometimes the person with injury has problems that may make it hard for them to communicate with other family members.

How to improve communication: Set aside times when family members can get together and share what’s been going on in their lives. For example, you can schedule a sit down dinner together once a week. This will let you enjoy each other’s company as a family again. Let all family members know that it’s okay to talk about the injury, even if some of their feelings are negative. Find new ways to communicate with the injured family member that get around any problems they have. For example, if they have trouble speaking, have them write down what they want to say.

Less affection among family membersThis problem may be related to

communication problems. Family members have less time to spend together and talk to each other. Thus, they may show affection for each other less. Sometimes family members may feel less affection for the person with injury because of physical or emotional changes. For example, if the person with injury is verbally/physically aggressive then other family members may feel less affection for them.

How to increase affection in the family: The same suggestions for improving communication can work here. Set aside some time to spend with your family members doing things not related to the injury. A fun activity is to get some old picture albums out and look at those. This will allow you to remember the fun times you’ve shared as a family. Accept that it is normal to not feel affection for the person with injury at times. That doesn’t mean that you love them any less.

This excerpt from “Picking up the pieces after TBI: a guidefor family members” is reproduced with permission ofAngelle M. Sander, Ph.D., with Baylor College of Medicine and TIRR Memorial Hermann. This free publication is available for download from www.tbicommunity.org or www.brainline.org. The work was funded by Grant No. H133B03117 from the National Institute on Disability and Rehabilitation to TIRR Memorial Hermann.

Will my family ever get back to normal?A brain injury can change the way the entire family functions


“I never thought this would happen to me!” is a very human reaction to a personal tragedy. We organise our lives

on the premise that we, and those around us, will live happy, healthy lives and follow a predictable path. Although we know that strokes, car accidents, suicide attempts, illnesses, sporting injuries and brain tumours occur frequently, we are usually caught by surprise when they suddenly change our own lives forever.

LossFor the person with the brain injury, life can change dramatically and they may report that their life or a part of themselves is lost. This loss may be felt in many ways over time, as there is a gradual awareness of what has been lost in terms of skills, health, abilities and opportunities. If their self-awareness has been affected, it may take them some time to gradually realise the extent of what they have lost. For some, this may be strongest

THE Long JoURnEY To ACCEPTAnCEPsychologists have proposed models to help explain the various emotions and stages we are likely to move through. A common model of the grieving process has five stages: denial, anger, bargaining, despair and acceptance. We have added confusion as this quite applicable to situations involving Acquired Brain Injury. This is a rough guide on what to expect on the road to recovery, as we may skip some steps, or occasionally revisit some at a later point.

ConfUSIon dEnIAL AngER BARgAInIng dESPAIR ACCEPTAnCE

Commonly called post-traumatic amnesia (PTA), this stage means the person with a brain injury may be very disoriented, not recognising family members, or becoming sad or angry very easily. It can be very distressing for the family, but is usually only a temporary stage. For family members, it can be a feeling of unreality, overwhelmed by the enormity of a loved one’s injury.

Often the first reaction to loss, denial acts as a buffer to protect against being overwhelmed by strong emotions such as anxiety and fear. Without a period of denial, the shock of acquiring a brain injury could prove too much for some to endure. Time is usually one of the best remedies. A good approach for working through denial involves providing a supportive environment for the person to face difficulties and learn about their new limitations. For family members, denial can be refusing to believe the injury has happened, or refusing to accept what doctors may be saying about the extent of the injury.

For the survivor, anger and aggression can develop as a direct result of the brain injury. It can also be a reaction to how life has changed, and family may be targeted. The difficulty in assisting people through the anger stage is that to agree with what they are saying may reinforce their negative thoughts, while to disagree may turn their anger against the person trying to help. It is generally recommended to only agree with what is believed to be true, and to offer a second truth to challenge the statements that are considered false. Another way of coping with the person’s anger is to give them some personal space, but not avoidi them. Encourage them to minimise stress in their life, without cutting out personally meaningful activities. Avoid critical comments or pointing out how they have changed.

Coming to terms with loss


ConfUSIon dEnIAL AngER BARgAInIng dESPAIR ACCEPTAnCE

Bargaining may be an indication that the person is beginning to realise the extent of the injury. However, it also indicates that they are not yet ready to accept it. Bargaining may also be something that is done secretly, which means that it often goes unnoticed. People with religious beliefs may attempt to strike a bargain with God – perhaps making a silent promise to be a better person or go to church every week for the rest of their lives, in return for a full recovery. More recognisable signs come in the form of less drastic comments such as, “I’d give anything to have my life back.” The best support is continuing to be patient and positive by acknowledging how the person feels, and by feeding positive suggestions and encouragement about the present and near future.

As the acceptance of the effects of the injury begins to sink in, someone with a brain injury will often feel a sense of tremendous loss. Depression and self-blame may build to create a sense of hopelessness. Families and friends may feel helpless as they watch the person sink into deeper depression. Focussing on positive facts will help, such as the skills and abilities that remain, a loving family, the improvement to be expected in the first few years, and being alive against the odds. The added danger of the despair stage is that if it continues for too long, there is a risk of the person developing clinical depression or contemplating suicide. At any hint of this happening, professional help should be sought.

The acceptance stage is a period of reconciling the loss and preparing for the future with a renewed sense of wellbeing. However, while this may be the final stage of grief and loss, there is still a long way to go. To assume that all will be well may encourage false expectations. The person may require guidance to understand the impact of the brain injury, and to develop strategies to compensate for any problems that have developed as a result. Support groups can be a great help, for both the survivor and family members.

two years after the injury, when their brain’s limited ability to heal itself is over. The impact of a brain injury is often likened to the ripples in a pond when a stone is thrown in — those closest to the survivor are affected most, but the effects continue onward to extended family, friends, employers and the wider community. Families also experience loss. Faced by personality changes, they may feel as if their loved one has gone in a sense. Grief is a normal emotion when confronted by these losses, and each person will have their own way of gradually dealing with it. Ideally, everyone should have an understanding and acceptance of the grieving process to help them move through this difficult time.

griefSigns of grief can include anxiety, depression, guilt, restlessness, disturbed sleep, a sense of unreality and breathlessness. Our ability to work through grief is influenced by a number of factors, which may include how much support is available, our intelligence, personality type, beliefs and motivation.Some people tend to have a positive outlook on life. They are more likely to respond positively to grief by eventually converting the loss into a gain e.g. “this brain injury has made me work on self-development and being a better person”.Other people may have trouble moving beyond the initial stages of grief:Kieran walked past a pub and was suddenly beaten unconscious by an emerging group of youths. He is extremely bitter about these males who left him in a coma, and were never caught. Five years later, Kieran drinks heavily each day, even though it is making his injury worse and he lost all his friends. He rails against an unjust universe that could let this happen, driving his family further away in the process.Being unable to work through the grief process

to a point of acceptance can happen for family members as well:Jennifer has been caring for Sue, her 28-year-old daughter, since she had a stroke five years ago. Although she provides physical support efficiently, Jennifer is emotionally distant toward Sue as she cannot accept the depressed, lethargic daughter who replaced the cheerful energetic Sue of old. This has generated a rift with her husband, who can see Sue’s pain at not understanding why her mother shuts her out emotionally.People who fail to progress beyond the early stages of grief may run the risk of developing a psychological disorder e.g. a depressive disorder or anxiety disorder. If an individual continues to experience intense emotional distress beyond a reasonable time, professional advice should be sought. The difficulty will be in determining what constitutes a reasonable time because, as we have already established, grief is very personal and some will need more time than others.

Moving onHow do we know when a person has worked through grief, and made the necessary emotional adjustments? Acceptance can mean finally feeling realistic and hopeful about the future. For some people, it is coming to terms with what the experience has meant, and the ways in which life is both different and the same. Both survivors and family members talk of beginning to enjoy the pleasurable and beautiful things in life again. Acceptance also means going with the flow — experiencing a range of emotional reactions, both highs and lows, as ‘normal’ and understandable reactions to daily events. This goes hand-in-hand with feeling a greater sense of control of events and pursuing goals and challenges. We all grieve differently, and we all walk our own path toward acceptance:“... all this has led me to understand that the

universe is a godless expanse full of random, unplanned processes, completely oblivious to human existence. It had me depressed and angry for a while, but now it is strangely liberating. I make the most of each day, knowing I’m lucky to still be alive and it’s up to me what I do with the rest of my life. We only live once, with this one brain!”“My son’s injury really challenged my faith. How does a loving God allow such a horrendous thing to happen? I haven’t got the answer to that one, but it has deepened my faith and got me rethinking my priorities — family, relationships and friends on the one hand — versus career, possessions and pursuit of the almighty dollar on the other...”

factors in emotional adjustmentSome people tend to handle the stress of a brain injury better than others. For example, those who believe it is important to contribute to society and to people around them may look outside of themselves to see what they can do to make the world around them a better place. Generally these people tend to do better. Humour tends to be an essential component to recovery. A good sign is someone who can laugh at themselves and their situation. As one person with a brain injury said, “Sometimes laughing keeps me from crying.” Resorting to alcohol or drugs will often severely hamper a person’s emotional recovery. People who go to support groups often get a lot of positive feeling from being with others who have brain injuries. They want to openly talk about their frustrations, fatigue or poor memory. These people usually do better than those who keep it all inside. You can contact your local Brain Injury Association and see if there is a support group in your area, either for survivors or carers.


Have you ever had to be firm with someone, yet continue to smile to not make it seem so harsh? If so, perhaps you,

too, have played the role of The Big Bad Wolf. Those of you who read my article, We Breathe Together, were probably rolling your eyes thinking how nice it must be that our home is so calm, even despite our issues with my husband’s brain injury. However, no one is perfect and it wouldn’t be fair if I shared only the positive points of our brain injury survival journey. Under all the flowers and unconditional love and support, there are many dark days. I’ve had to play The Big Bad Wolf quite recently and this article explains why. Brain injury survival is difficult at all times. But when the survivor has the motivation to do everything as before the accident, the caregiver has to use some judgment and intervene at times to protect the person – whether it be physically, mentally or financially.

driving the carMy husband is at a very high rate of recovery in his brain injury. As a very independent person, he was used to going about his business and making his own decisions. If he needed to go somewhere, he got in his car and he went. These days it is a bit more difficult. Three years ago, I will never forget the first time I got in a car with Paul as the driver. I held onto the door handle for dear life as he whipped around corners, slammed his brakes

at the last minute (due to his lack of perception to the stopped car in front of him), and drove at outrageous speeds with no concern for my safety or his own. When I mentioned his driving to him, he quickly showed me the document he had from the Department of Motor Vehicles and his doctor saying that he was well enough to operate a vehicle. Perhaps his doctor should have taken a joyride with him in the car a couple of times before making that assumption!I love my husband more than anything. That was the reason I decided that if we were to continue in our relationship at the time, he would have to give up driving for a little while. I mentioned to him that I was concerned for his safety and the safety of others. We didn’t need another brain injury. It took a while for him to take me seriously, and eventually he agreed with me. Though he kept his driver’s licence, he stopped driving.Then came the evening that we picked up our new car at the dealership. Feeling that it was unfair to not even let him try out the car that both our names were going on, I asked if he wanted to drive from the supermarket back to our home. Two years on, I could see that his road perception hadn’t changed. Though I could tell he was trying to be very careful, it just wasn’t working for me. He still didn’t give me the feeling that he knew exactly what he was doing behind the wheel. At this point, the Big Bad Wolf had to come into the picture and explain that it still wasn’t time

The big bad wolfby Anne Gianni

Warning: fragile!

Traumatic brain injury accounts for a large percentage of brain injuries. The cause is usually a blow to the head, or the head being forced to move rapidly forward or backward, usually with some loss of consciousness. Brain tissue may be torn, stretched, penetrated, bruised or become swollen. Oxygen supply to brain cells can be affected, and there may be bleeding.

The effects of traumatic brain injury can be temporary or permanent. It may be a mild injury, such as being momentarily stunned while playing football, or a very severe injury that may cause prolonged loss of consciousness. Concussion for any period of time, however slight, may result in a brain injury. While most people make a good recovery, many are left with lasting effects that, even if mild, may have significant consequences for everyday living.

It is important for the person and the family to be optimistic but realistic about recovery and to develop a better understanding of what is or isn’t possible. Recovery is usually rapid at first with improvements occurring as swelling and bruising of the brain subside. Improvements continue as damaged cells heal, but healing can be slow. The most significant improvements usually occur in the first six months. However, good gains can continue for at least two years and many people report ongoing improvements for long after that when they keep applying the strategies they learned during rehabilitation.

Effects of a brain injuryPeople with ABI may experience long-term effects with medical difficulties, physical and sensory abilities, changes in cognition, behaviour, personality and communication. Long-term effects will be different for each person, but some of the more common ones are memory problems, fatigue, poor concentration, lack of motivation, irritability, anger, inappropriate behaviour, poor social skills, self-centredness, dependency, lack of insight, slowed responses, poor problem-solving, depression and impulsivity.

Some of the more common physical effects are loss of taste and smell, dizziness, balance problems, seizures, headaches, visual problems, chronic pain and paralysis.


yet. Someday I hope to have Paul re-enrolled in a driving course. However, I feel it is imperative that a doctor ride in our passenger seat next time.

Handling moneyFinances are another issue in our home where I have had to assume my Big Bad Wolf role. I have been in charge of our finances since I saw Paul bounce cheque after cheque while we were dating. Bills would come in the mail and he would toss them aside, not even opening them. I knew that if I was going to marry this man and combine our finances, then I had to take the reigns. Since then I have managed our checking account and all our bills. We have no debt and it feels good that way. Though Paul knows this, he still at times complains that he has no financial control and that he “needs” something. There are days when my frustration just belts out “Fine, take the checkbook, take ALL the money.” However, I know that if I were serious, he would go into any store and purchase things he “needs” just because. For instance, Paul has recently looked into teaching a computer course at a local correctional facility for inmates who would like to learn computers. He had not even been hired for the position or completed his course outline to submit to the facility, but he wanted to purchase an $80 leather bag for his teaching job. In addition to this, he wanted to buy all new work clothes.

As horrible as I felt, I had to say no. I told him that he should not purchase these items until he was hired. I had to take into consideration his excitement for getting out there and working a couple hours at something he loves, but I also had to keep it real. Yes, I was again. . . the Big Bad Wolf. If it were up to Paul, we would deplete our savings and go spend like crazy. I can’t let this happen. Paul gets mad at me a lot of times for making these decisions. We argue back and forth about different things. I try to pound reality into his thoughts and he argues like a murder attorney until he can’t argue any more.

Message for caregiversMany caregivers have to put on their Big Bad Wolf costume. It hurts, and it is one of the hardest things that we must do. However, in the long run it is to protect the best interests of our loved ones. My advice is to have an exact explanation as to why you are setting these parameters. “Just because” is not a good enough reason. Tell them why, as this is how they learn. Eventually, they may come to realise that everything you did was for their own well being. I am still hoping that my husband recognises this and will someday applaud my Big Bad Wolf performance.

Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from www.lapublishing.com/blog

Brain surgery with bamboo?!

Surgery has been around a long time. Even 12 000 years ago, people had holes cut in their skulls in many different cultures. Even more surprisingly, they occasionally survived. In the 19th century, Fijians were using this surgical technique, trephination, to treat brain injuries.

When someone’s skull was cracked, this trephination (also called ‘trepanning’) was used to reduce the pressure from brain swelling and reduce the risk of death and permanent brain injury. The most remarkable fact was that the Fijians achieved a 70% success rate while London surgeons at that time only had a 25% success rate! *

The Fijians trick was largely one of hygiene. They would wash their hands and the injury repeatedly in coconut milk which is remarkably similar in chemistry to our body fluids (it has even been used for transfusions when blood products have run out in war zones!). Scalpels and tweezers were made of bamboo for cutting and removing bone and damaged brain tissue. After sewing up the wound, it would be checked a few days later for infection which would be cleaned out again with coconut milk.

As you would have guessed, the main problem for the English surgeons was a lack of hygiene in badly overcrowded hospitals. Things have improved in today’s medical settings, so thankfully there is no need to use coconuts and bamboo today.

* “Brain Surgery in the South Pacific”, Medical Observer, 17 March 1995, pp. 74-75


Losing friendsA personal story on losing friends after acquiring a brain injury

I read an article about happiness the other day. It seems all the latest scientific research confirms what many of us knew

already — the main key to happiness is the people we know, such as partners, children, friends, relatives and parents. We may desire power, sex, status and the latest mobile phone that doubles as a microwave oven, but these do little to provide lasting happiness.

About two years after my brain injury, I realised I had lost many of these connections with people, and my level of happiness had dropped accordingly. Why? I was one of the fortunate ones in that I did not have a raging temper that drove people away. I thought I had largely avoided the self-centredness that apparently can arise from a frontal lobe injury. So what had happened?

BitternessAnger and self-pity were my main reactions

for some time. These were so-called friends who I had helped through some major crises in their time. Others I had known for years and assumed the depth of friendship would mean they would hang around as I recovered.

My partner had the answers, although I was not keen to hear them at first. She said much of the problem was my social skills. Apparently I did not listen they way I used to. I tended

to rave on now with long rambling sentences about things that bored everyone. When others talked, apparently my eyes glazed over after two sentences and I looked bored. I was quite blunt and could offend others in subtle ways (“that’s an ugly dress, why did you buy it?”).

Unpleasant feedbackThese problems were only the tip of the

iceberg. Thankfully, my better half is quite sensitive, and she gradually revealed the many ways I had changed. Even so, I was angry as I thought she was simply criticising me for the sake of it. However, with time I had to acknowledge she was right, then I would try to deal with that issue before she brought the next one up.

Five years down the track and I still haven’t regained many of those lost friendships. But I am less bitter now. What if the situation was reversed? What if a close mate had completely changed after an accident? What if he was now moody, demanding, never listened to me, rambled on about himself in a confusing way and had essentially become a different person?

I know I would have hung around for a while as a strong friendship demanded, but eventually I would have given up and concentrated on friendships which had more give-and-take. And of course this is precisely how my closest

friends did react. So I’d be a hypocrite if I held bitterness against them for too long.

Any answers?I’m in a support group now. Most of us agree

that the first stage is bitterness against friends who have deserted us. Then there is the long process of realising how much we have changed and how it affected our relationships. The toughest part is usually making the decision to do something about it. I know some who have chosen to stay with self-pity, alcohol to numb the pain, anger against the world or hating themselves. I don’t blame them. Unless you’ve had a brain injury, you simply can’t grasp how demoralising and terrible it can be. It takes a truly heroic effort to lift yourself up and commit to truly living again.

Happy endings?I’ve got some of the old me back. It’s been

bloody hard, but slowly I am relearning how to interact with others again in a way that doesn’t drive them away. There are still days when the constant fatigue gets to me, and I fall back into old patterns. I don’t think there is a happy ending as such, but I can choose to keep moving forward, or simply stop and slide backwards. It is a tough journey, but worth striving for.


Think of the people you most like being around. Chances are they have good listening skills. When somebody really

listens to you, you feel understood, appreciated and worthwhile. When somebody just raves on about themselves constantly, you are inclined to see them as boring, arrogant or self-centred.

A brain injury can lead to a loss of listening skills. Why? We are born selfish! Growing up is a long process of learning to balance our needs with the other seven billion people living on the planet, but particularly those closest to us. A brain injury can disrupt much of this hard-won experience, and we can revert to our earlier basic patterns. Speaking about ourselves is a much easier skill than listening, so you may be more inclined to talk about yourself. The problem is you may now have trouble organising your thoughts into compact, structured sentences for others, so you may tend to rave on and on. The next problem is you may have lost the ability to pick up non-verbal cues from others. You may not be able to interpret the signs of boredom — the other person does not keep eye contact, keeps looking at their watch, or looks frustrated at not being able to get a word in. When your social skills have been disrupted, you will need to begin the slow process of relearning these skills. One of the most important is learning to listen to others, as this is perhaps the most crucial skill for keeping old relationships and beginning new ones.

Ask questionsPeople love to feel you are interested in them. Instead of trying to talk about yourself, focus on the other person. Get interested in what they are talking about. Ask plenty of questions but make sure they aren’t too personal. If you have trouble with disinhibition, you may be inclined to ask offensive questions about their sex life or how much they earn. Be appropriate!

Balance the conversationTry to keep an idea of how much ‘air space’ you are hogging. You should be letting the other person talk at least half of the time. The more you let them speak, the more they will appreciate the conversation.

Look out for social cuesMuch of our communication is non-verbal. You

know the person is probably not enjoying the conversation when they don’t keep eye contact, turn away from you, look at their watch or stop smiling. These may be an indication you have talked too long, or on a topic they don’t find interesting. Of course, they might just be depressed themselves, or need to be somewhere else. Non-verbal cues are tricky to read at the best of times — where possible, get feedback later from a friend without a brain injury on how you went in conversations with others.

Look interestedAsking questions is only part of good listening. It helps if you smile, nod and laugh in the right places. This is hard if you are depressed or nervous, but practise anyway.

To tell or not to tellShould you tell new friends about your brain injury? It can be a tough decision — on the positive side people may be far more understanding of troubles you have with communication. On the negative side, many people have a poor understanding of brain

injury and may be afraid of something they know so little about. Talk with family members or close friends you trust about making these decisions.

Practice makes perfectPractise with someone you know. Exercising your listening skills can be hard in new social situations. Sit down with a good friend over coffee and deliberately practise these skills. Tell them you need to refine your listening and ask them for feedback on how you are going. Ask them if the ‘personal space’ is right. Sometimes, survivors stand or sit too close to people when talking!

Avoid alcohol and drugs. Plenty of our social interaction revolves around alcohol. Remember it will only amplify your tendency to rave on, say inappropriate things, or be unable to listen effectively. Stick with the orange juice and work on your social skills instead.

Keeping friendsUseful communication tips for retaining old friendships and making new ones


In addition to the medical consequences arising from acquiring a brain injury, a person with brain injury and their family

may be confronted with a variety of legal issues. Because every person’s situation is unique, and because the law is different in each State, it is important to consult a solicitor to obtain legal advice that relates to your particular circumstances. The following is a general guide to the legal issues surrounding acquired brain injury. Please note that this fact sheet is relevant to Queensland. For accurate legal guidelines in other areas, please contact your local Brain Injury Association.

MAKIng A WILLAlong with the Enduring Power of Attorney, a

Will is amongst the most important documents most of us will ever sign. Anyone can make a Will, as long as they are over eighteen years of age and have testamentary capacity at the time. It is recommended that a Will be prepared through a professional service, as a Will produced contrary to the requirements of law may lead to lengthy court proceedings and may be ineffective. The Executor of a Will is the person appointed to attend to the administration of the estate. They should have the necessary knowledge, experience and judgment to perform the task.

MARRIAgEA person with a disability is subject to the

same marriage laws as any other person. A person can marry provided that they have the ability to understand the nature and effect of the marriage ceremony at the time of the ceremony.

VoTIngThe law states that a person who is incapable

of understanding the nature and significance of enrolment and voting is not entitled to vote. In reality, a person’s eligibility to vote is unlikely to be questioned when they enrol. If an objection is raised regarding a person’s eligibility, the Divisional Returning Officer will decide upon the issue. The decision of the Divisional Returning Officer is then subject to appeal.

EnTERIng A ConTRACTA person entering into a contract must have

the ability to comprehend the nature of the agreement being entered into. If a person with a brain injury has a cognitive disability and enters into a contract, the obligations entered into in the contract may be questioned.

Whether or not the contract is enforceable will depend upon a variety of factors:

• Whethertheotherpartykneworoughttohave known of the person’s disability.

• If the subject of the contract was not anessential item, such as food.

• If the person was subject to a protectionorder at the time of entering into the contract.

• If an innocent third party acquired aninterest in the subject matter of the contract.

• Ifsubstantialresolutionispossible.• If the contractual document was signed

with a mistaken belief regarding the subject matter or the nature of the document.

Any queries regarding the nature of a contract or a person’s rights concerning a signed contract should be taken up with a solicitor or other legal professional.

SPECIfIC LAWS And PEoPLE WITH A dISABILITY

The law is a set of principles and guidelines designed to protect and give all Australians the freedom to live without fear of intrusion by others.

People with a disability are no different.Laws are as applicable to people with a

disability as they are for everyone else. However, legislation has been passed through parliament, which is specifically designed to cater for the additional needs of people with a disability.

The Disabilities Services Act 1986 gives people with disabilities the right to:-• Receiverespect fortheirhumanworthand

dignity as individuals.• Realise their capacities for physical, social,

emotional and intellectual development.• Access services that support obtaining a

reasonable quality of life in a way that supports their family unit and their full participation in society.

• Agrantoffinancialassistancetoensurethata minimum quality of life is attainable.

Each Australian State has additional legislation that supports and enhances the above points, for example the Anti-Discrimination Act aims to prevent a person being discriminated against because of their disability. Any concerns can be forwarded to the Anti-Discrimination Commission.

Children with disabilitiesThe entitlement of a child to receive an

education cannot be denied. The concept of “inclusive education” provides that a disabled child’s specific needs should be met in a classroom community. Various Commonwealth and State Acts have been introduced to assist children with a disability attain an inclusive education.

If a person believes their child has been disadvantaged or discriminated against because of the child’s disability, they may lodge a complaint with the Education Department, which should have a specialised legal unit to investigate complaints raised regarding discrimination.

ACCESS foR THoSE WITH dISABILITIESThe Building Code of Australia has clear

specifications for the inclusion of appropriate measures to make public buildings easier to access by people with a disability. The Disability Discrimination Act also contains a provision that specifically addresses access to public property for people with a disability.

Employment for people with disabilitiesThe main purpose of Equal Employment

Opportunity policy is to identify key minority target groups and to set guidelines to help ensure that their opportunities for employment are no different to those of other people. These laws have made it illegal for an employer to discriminate against people with a disability, whether it be in choosing someone for a job, the way an employee is treated, or the dismissal of an employee. Any issue regarding possible violations of these laws can be forwarded to the Anti-Discrimination Commission.

CRIMInAL LAW And PEoPLE WITH dISABILITIES

A person with an Acquired Brain Injury has the same rights as any other person under criminal law. They have the right to remain silent and the right to obtain legal representation. They also have the right to apply for legal help from the Legal Aid Office. A person with an Acquired Brain Injury who has committed an indictable offence must be placed for a committal hearing at the earliest available time. The mental capacity of the person will be assessed in order to identify their capacity to stand for criminal trial. Any queries regarding this should be directed to the Legal Aid Office or to an independent legal representative. If a person with a brain injury is to be interviewed by the police regarding a criminal matter, a third independent person must accompany them; usually a Justice of the Peace, solicitor or parent. Their job is to be present during the interview to protect the rights of both the person with the brain injury and the investigating officers.

This information was published thanks to Shine Lawyers Brisbane. For more information them on call 13 11 99.

General legal issues


Documents

011 - Bridge Magazine - DisabilityCare Australia (2013)