004 - Bridge Magazine - You Are Not Alone (2011)

VOL-4

In this issue: YOU ARE NOT ALONE Overcoming loneliness Relationship problems Banging on beanies

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Life with a brain injury in remote areas

BRIDGE VOLUME 4 – September 2011

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ISSN 1448-9856 General Editor: Project Manager: Contributing editors:

Barry Morris Glen Farlow Clare Humphries Anna Petrou

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

Relationship problems & solutions

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VISUAL DIFFICULTIES: For those with visual problems, go to www.synapse.org.au and view the free online version which can be expanded on screen.

DISCLAIMER: While all care has been taken to ensure information is accurate, all information in this publication is only intended as a guide, and proper medical or professional support and information should be sought. The Association will not be held responsible for any injuries or damages that arise from following the information provided. Material within does not necessarily reflect the policies of Synapse or the staff and Board of Management. References to other organisations and services do not imply an endorsement or guarantee by Synapse.

Self-advocacy for beginners

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Supported by financial assistance from

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INDEX 03 06 07 09 11 11 13 15 17 19 20 21 25 27 29 1 / BRIDGE MAGAZINE

Overcoming loneliness What makes a good relationship?

Life with a brain injury in remote areas The last three years Relationship problems & solutions Never give up!

Banged on a beanie yet?

Self-advocacy for beginners Positive ways to manage behaviour In memory Sensory & perceptual skills Between the sheets Know thyself Continence problems It only takes one punch

One of the greatest issues after a brain injury The good oil from Relationships Australia Gerowyn Hansen talks about life in the sticks Bob’s story – homelessness, prison & drugs Useful strategies from Psycare Inspiring personal story on recovery The ongoing quest for brain injury awareness For accessing scarce resources & support ABIOS tips for a challenging area A story of grief, loss and hope Article from our ABI: The Facts publication Adjustable beds, ulcer prevention & cushions Story about personality changes post-injury Types, causes, diagnosis & treatments A teenager’s wake-up call on violence

bridging THE GAP

Jennifer Cullen CEO of Synapse

You are not alone Despite the crushing poverty she faced in the slums of Calcutta, Mother Teresa said “the most terrible poverty is loneliness, and the feeling of being unloved.” Of all the disabilities an Acquired Brain Injury is the one capable of causing the most loneliness, for the person with the brain injury and also their carers.

Why? While the person may be confined to a bed, cognitive and personality changes often mean a loss of friends, employment, partners, and even family members, while behavioural issues can lead to no community access, and even imprisonment.

The wide ranging impact of a brain injury often means that carers must devote nearly all their time to the caring role, and will

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Synapse is funded by Home and Community Care, a joint Commonwealth and State/Territory program providing funding and assistance for Australians in need.

experience similar losses in terms of friendships, employment and community access.

To make matters worse, there are very few support services in the Acquired Brain Injury arena, which only adds to the isolation and feelings of abandonment for carers and people with a brain injury.

Gerowyn Hanson is a regular contributor to Bridge and offers some great insights and strategies on living with a brain injury in a remote area on page three.

The best antidote to loneliness is making new friendships and maintaining your existing relationships. To this end, this issue looks at resolving problems in existing relationships, build your communication skills, and practical tips for meeting people and making new friends.

To address the lack of services, we look at self-advocacy skills for beginners so you can maximise your chances of accessing scarce support and services. And most importantly in the long run, we encourage you to support the BANGONABEANIE campaign. It can’t be emphasised enough that raising awareness of Acquired Brain Injury at both the community and national level is crucial for a better future.

Why? It will lead to better funding for support and treatment services, community awareness of challenging behaviours, less misdiagnosis, prevention programs and longterm rehabilitation options, just to name a few.

We can only hope for a day when no one feels alone when a brain injury impacts on their lives. ◗◗

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

Synapse Inc. Headway Gold Coast Brain Injury Australia Brain Injury Association of NSW BrainLink Services Brain Injury Association of Tasmania Headwest Brain Injury Network of South Australia Somerville Community Services

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

Email: info@synapse.org.au Email: admin@headwaygoldcoast.org Email: admin@braininjuryaustralia.org.au Email: mail@biansw.org.au Email: admin@brainlink.org.au Email: enquiries@biat.org.au Email: admin@headwest.asn.au Email: info@binsa.org Email: scs@somerville.org.au

Web: www.synapse.org.au Web: www.headwaygoldcoast.org Web: www.braininjuryaustralia.org.au Web: www.biansw.org.au Web: www.brainlink.org.au Web: www.biat.org.au Web: www.headwest.asn.au Web: www.binsa.org Web: www.somerville.org.au 2 / BRIDGE MAGAZINE

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Overcoming loneliness Loss of good relationships with friends, family members, and co-workers may be one of the greatest difficulties after brain injury.

Many survivors describe feeling lonely, isolated, and misunderstood. Best friends may disappear and family members may seem distant or unhelpful.

No doubt, brain injury causes medical and physical problems. Having a brain injury can also change the way you think, feel, and act toward others. Understanding how brain injury has affected the way you feel and act is an important first step. Then you can learn how to improve old relationships, develop new relationships, and feel better about life.

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How are you treating other people?

You may be thinking a lot about how others treat you. You may have noticed that friends, family members, and co-workers are treating you differently. Just as important is thinking about how you treat other people. Keep in mind that relationships are a two-way street.

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The way you act toward other people affects how they treat you. Think about how you’ve been acting.

Are you saying or doing things that cause other people to feel uncomfortable? Possibly you are you pushing others away by: • focussing on what’s wrong with your life and the world • not listening when others speak, interrupting, or talking too much • not thinking about other people’s needs or feelings • arguing or disagreeing • talking only about yourself • asking people very personal questions • talking mostly about your brain injury and how your life has changed for the worse • repeatedly rejecting others’ advice, suggestions, or offers of help

• touching people without asking if it’s okay or standing too near to them • not taking care of your appearance • saying things that hurt other people’s feelings.

Common feelings after a brain injury Why is it that many survivors feel lonely, even when around family members and friends?

Loneliness is a normal experience for most people from time to time in their life. It’s a feeling of being disconnected, that something is missing in their lives. After a brain injury, loneliness can seem more difficult to deal with because of the changes that often result.

Understanding how brain injury has affected the way you feel and act is an important first step. The following are common feelings expressed by people with brain injury…

Difficulty communicating or relating to others: After injury, some survivors have trouble

talking to other people or understanding what others are saying.

Fear of being hurt or rejected by others: Many survivors describe feeling nervous about being around other people.

Irritability or feelings of frustration: Friends and family may feel uncomfortable because they don’t know what to say or how to help.

Fatigue and loss of energy: These are common after injury. Many survivors find they don’t have the energy to do things they used to enjoy or to spend time with friends and family.

Worry about being different or less capable than others: These feelings often make it difficult to be around other people or to seek out new relationships.

Frustration with inability to drive or work after their injury: Lack of transportation and less money makes it hard to pay for activities.

In addition to these feelings, some survivors find that they lose contact with their friends and co-workers because they don’t see them as much, especially if they have not returned to work or to school.

WAYS TO OVERCOME LONELINESS Here are some simple steps and actions you can take to overcome loneliness.

Identify and develop interests and hobbies that you can do by yourself Plan to spend time alone doing things that you enjoy such as drawing, crafts, gardening, crossword puzzles, reading, listening to music, tracing your family tree, keeping a journal or thousands of other activities. You’ll be a more interesting person, and have more positive things to talk about with others.

Exercise Exercise will increase your energy and help you to feel better about yourself. You can also meet people by joining a gym, health club, the YMCA, a walkers group, or other physical activity.

Limit television Limit the amount of time you spend watching television or playing video games by yourself.

Greet people with a friendly smile A smile and direct eye contact makes you seem more friendly and confident. Approach people instead of expecting them to approach you.

Healthy diet and limit or eliminate alcohol A healthy diet gives your body the energy it needs, and can effect how you feel. Alcohol depresses your mood, and can magnify behaviours that make it difficult for others to be around you.

Follow the medication schedule that your doctor prescribes If you don’t like the way the medication makes you feel, talk with your doctor about

SOME PLACES YOU MAY MEET PEOPLE • Support groups (check with the Brain Injury Association in your State, see page 2) • Community events, such as theatrical and music productions (many communities have local theatre and choral groups and many high schools and colleges put on plays and concerts) • Art shows, museums and galleries • Book clubs, book signings and poetry readings at bookstores and libraries • Sports events (consider community recreational leagues through your local parks and recreation department, as well as college and professional sports) • Political meetings • Independent Living Centres • Classes at an adult education program or community college • Civic groups, such as Rotary or Lions Clubs • Community organisations such as soup kitchens, food pantries, day care centres, hospitals, nursing homes, schools and animal shelters often need volunteers making changes. Just stopping medication can cause physical problems, as well as, bring changes in behaviour and personality.

Try not to be overcome by your problems or the challenges you face Look for the good in yourself. If you are feeling overwhelmed or depressed, your physician or community mental health program can help connect you with the professional counselling and support services you may need.

For more information on services, contact the Brain Injury Association in your State.

Offer to do things for other people without expecting something in return Everyone does better with understanding and support from others. Help someone carry their groceries, walk their dog, or bring in the mail.

Ask others for more ideas about how you can be helpful. Helping, caring for, and reaching out to other people are good ways to show others that you are the kind of person they want to be around.

Ask others for help when you need or want it Asking others for help means that they don’t have to guess what you need. It can help them feel more comfortable, and you’ll feel better knowing that you have taken control of getting your needs met. Most people are understanding and want to help, but many don’t know how to help. For example, when travelling by car, ask a close family member or friend to drive, or take turns driving.

To meet more new people, you must be around people Since you won’t become friends with or want to date every person you meet, you’ll need to meet a lot of people to find even one good friend. Don’t limit yourself to one idea or way to meet people.

Keep an open mind Think about places where you have met people or made friends in the past. Check your local newspaper for free or low cost community events and support groups. Make a

commitment to go to at least one of these new activities each week. While it may be hard to go the first time, keep in mind that it’s hard for most people to try new things, and that most of the time, you’ll be glad you went.

Consider adopting a pet There are many pets out there without anyone to take care of them. You may be able to offer a pet a loving home and find yourself with a grateful companion in return. For more information about what is needed to adopt a pet, contact your local RSPCA. Write, call, or e-mail your family and friends Talk to and spend time with people who care about you. Call or write someone even if you’re just saying hi. Plan to keep in touch once every week or two, even if they don’t answer you every time.

Do volunteer work Religious groups, schools, hospitals and libraries often need volunteer workers. By helping others, you are likely to meet other people with similar interests. Many local newspapers publish a list of volunteer opportunities and many websites list opportunities (check out www.volunteeringaustralia.org for volunteer organisations in your State).

Become involved in community and faith-related activities You stand a good chance of meeting people with similar interests or faith in your community.

Learn about brain injury, community resources, and recovery. Get involved. Contact your nearest Brain Injury Association (see page 2) to find out about support groups, how you can get involved, and about other resources in your area.

Limit the time you spend on the Internet, in chat rooms and other online connections Some people use the Internet as a way to reduce loneliness. Others use chat groups and other online connections to make friends.

There are a lot of groups online, but these 4 / BRIDGE MAGAZINE

CONTINUED FROM PREVIOUS PAGE “virtual” connections lack an important part of friendship – live interaction with another person. And sometimes, people are not who they say they are. Be careful about giving out personal information, such as your address.

BUILD LASTING RELATIONSHIPS Learn to like yourself If you don’t like yourself, it will be difficult for you to reach out to people who may become friends. Positive thinking won’t necessarily find you friends, but negative thinking will definitely prevent you from making and keeping friends.

Focus on what you can and like to do. Celebrate your accomplishments. Believe that others will like you ... and they most likely will. When you have a positive attitude about yourself, other people will notice it.

Write down a goal about making and keeping friends Post it in a place where you will see it and remember to work on it. Make an effort to make new friends. That can take energy, and sometimes even courage. Take the initiative to ask the other person to share a fun activity with you, like going to a movie, watching a video, taking a walk, going window shopping or to a sports event. Look for someone who shares an interest with you. And, if it doesn’t work out at first, keep trying. You won’t meet people and have the possibility of making friends if you give up.

Take care of your physical appearance It is very common for people who become discouraged about themselves and their lives to reduce the attention they pay to personal care.

No matter how you feel, be sure to clean your clothes, brush your teeth, and comb your hair.

People will have a better view of you, and you will feel better about yourself if you take good care of your appearance.

Ask questions Questions help you understand what the speaker is saying, and let the speaker know that you are listening and interested. Ask others about their lives, interests and well-being, and listen carefully to what they say. Show the speaker that you are interested. Look at them, nod your head and smile or say “Uh huh” or “I see” from time to time. Ask questions about things the other person is talking about or is interested in.

Remove distractions If you have difficulty paying attention, turn off the television or radio when having a conversation or ask the other person to do so.

Be a good friend Be the kind of person that others like to be around. Accept others for who they are.

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Be honest and dependable. Respect the other person’s feelings, even if you don’t feel they are respecting yours.

Communicate in positive and helpful ways Some survivors of brain injury are quick to share negative thoughts and feelings with others. Make a point to focus on and tell others about the good things in your life or the world around you.

Be aware that relationships have ups and downs Nearly every person, with or without a brain injury, has experienced relationship troubles in their life. There will be good times and not so good times in most relationships. Be patient and look forward to the good times.

Fight fair Conflict in a relationship is normal. Handled well, it can help you and the other person grow together. When you have a disagreement, be specific about the issue and address it when it happens. Tell the other person how you feel. Don’t blame the other person. Ask for information so you can better understand why he or she did something. Be quick to forgive; it gives you and the person a better chance to build a strong relationship.

Be polite, kind, and considerate Encourage the quality of your relationships to grow. Show you care and that you are concerned about others. Before you do things, think about how others will be affected by what you do. Try to do more things that will help other people feel good about you and themselves.

Try to think of others at least as much as you think about yourself After brain injury, you may feel overwhelmed by the changes in yourself and your life. You might have trouble not thinking about your injury and the challenges you face. Thinking about others is really a skill. The more you practise, the better you get. Make a note of birthdays or other special days in your family and friend’s lives, set a reminder a few days early and send a card or give the person a call. Free

common signs of loneliness Have you found yourself saying: • “Nobody has any idea what I’m going through.”

• “What happened to the friends who came to visit me in the hospital?”

• “Nobody cares about me.”

• “People seem to avoid me.”

• “My wife threatens to leave me at least twice a week.”

• “Seems like everyone at work has lost my home phone number.”

• “I wonder why my boyfriend won’t return my calls.”

• “I can’t relate to other people. It’s easier to be by myself.”

• “Seems like nobody wants to talk to me.” electronic cards are available on many websites including www.hallmark.com Think before you speak Think carefully about what you want to say and how others might react. Try to say things in a way that brings a positive reaction. Sometimes it helps to write down what you want to say.

Be prepared to work at building relationships Relationships don’t just happen; they take time and effort. And, don’t give up too soon on a new relationship. Give it time. Accept that it may not have the same priority for the other person that it does at this moment for you. To help you get started in building better relationships, try to do at least one good thing for someone else every single day.

This article has been reproduced with the kind permission of Brain Injury Association of America. Visit their website at www.biausa.org for fact sheets and personal stories.

ABOUT THE AUTHORS Jeffrey S. Kreutzer, PhD, ABPP is a Professor of Physical Medicine and Rehabilitation, Neurosurgery, and Psychiatry at Virginia Commonwealth University Medical Center.

Dr. Kreutzer, a founding member of the Virginia Head Injury Foundation, is an active consumer advocate and has authored or co-authored more than 125 publications, most in the area of traumatic brain injury and rehabilitation.

Lee A. Livingston, PsyD is faculty in the Department of Physical Medicine and Rehabilitation at Virginia Commonwealth University Medical Center. Dr. Livingston is active in providing clinical services to survivors and families after traumatic brain injury. Dr Livingston has co-authored a number of articles and book chapters central to enhancing recovery and adjustment after brain injury.

Laura A. Taylor, PhD is a Licensed Clinical Psychologist and an Instructor in the Department of Physical Medicine and Rehabilitation at Virginia Commonwealth University Medical Center. Dr. Taylor has an active clinical practice in which she provides individual family therapy, marital therapy, and psychotherapy to survivors and their family members. She is actively involved in developing educational materials and programs for survivors and their family members.

What makes a good relationship?

The facts have been revised AcquirEd BrAiN iNJurY:

All people change over time. People sometimes say that their partner has changed. ‘They’re not the person I met all those years ago!’ No – they’re not. Chances are both partners have changed in many ways – in their interests, confidence and attitudes.

Most couples go through a number of stages in their relationships:

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In love This is a time when couples wear rose-tinted glasses, and idealise each other. They can’t spend enough time together, and make light of any differences between them. Love will conquer all.

Recognising differences Eventually couples move on to the next stage of their relationship. This can happen early in their relationship or sometimes not for a year or two. Couples begin to be aware of the differences between them, and become more realistic in their view of each other. Arguments that are more than lovers’ tiffs will often occur.

The earlier experience of being in love and the bonding together of the couple now come into play and serve to re-assure couples that their relationship will survive.

I want to be me Most couples in the third phase are learning how to be individuals and much of the energy of the two partners goes into establishing their own lifestyle – as parents, in their work and in their interests outside the home.

This is often a time when the relationship seems to coast along and the partners want less from each other. They know the relationship is there, and it is safe to be busy in the outside world.

Together by choice The fourth phase is a process of finding each other again, of seeking greater intimacy and deepening the relationship. The partners now have a stronger sense of themselves as individuals. They are choosing to be together, to be dependent and intimate at times, rather than needing to be together.

This phase represents the end of the journey from being “in love” to “loving”. There is

a growing balance between ‘I’ and ‘us’. The relationship is based on choice rather than dependency – two partners, who are not afraid to be independent, who choose to be together and to be intimate.

Relationships can also change • if children arrive – and as the children go through various developmental stages and eventually leave home • if there are financial pressures • if work demands and responsibilities change • when one or both partners retire from work.

Some couples face unexpected changes like: • illness • disability • unemployment • living apart caused by, for example, employment.

All changes present their own challenges to couples, but are easier to cope with if the relationship is solid.

What does a good relationship need?

• respect • honesty • trust • love • companionship • mutual emotional support • intimate expression • economic security are all important parts of an adult relationship. ◗◗ Reproduced with permission from Relationships Australia, a leading provider of relationship support services for individuals, families and communities. Relationships Australia is a community-based, not-for-profit Australian organisation with no religious affiliations, which aims to support all people in Australia to achieve positive and respectful relationships.

Services are available around the country, including counselling, family dispute resolution (mediation) and a range of family and community support and education programs.

Visit their website at www.relationships.com.au or ring 1300 364 277 for more information.

Third Edition

ISBN 978-0-9581040-2-9

The practical guide to understanding and responding to Acquired Brain injury and challenging Behaviours

Our well known publication, Acquired Brain injury: The Facts, has been revised and reprinted. This comprehensive 82-page publication covers all the major issues arising from Acquired Brain Injury, from the hospital phase through to long-term issues like legal problems and maximising your recovery.

Like a free copy? Call Synapse on 07 3137 7400 or email info@synapse.org.au to grab your copy. It helps if you can pay for postage but rest assured if you can’t afford this we will mail it to you at our expense! ◗◗

FACT SHEETS

After practical solutions to specific problems?

Remember our website has dozens of fact sheets grouped under the following headings: • Causes of Acquired Brain Injury • Health and Medical • Behavioural • Psychological • Social • Services • Issues and Statistics Visit synapse.org.au to either read these online, share with others, or print out to read at home.

If you would like to contribute to our fact sheets, or if you have relevant content you would like to publish on our site, please email info@synapse.org.au ◗◗

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Life with a brain injury in remote areas

by Gerowyn Hanson

Social isolation is common in the city, it gets even tougher in remote communities.

For part of the year, I live alone in a remote community of about 100 permanent residents, approximately 1000km west of Brisbane. The town covers an area of roughly three square kilometres. None of the shacks or houses at my end of town is occupied for more than a couple of months of the year. We do not have a doctor, post office, pub, bank or police station. Not only that, but there is no fuel, or public transport in or out of town. The winters are cold, and the summers unbearably hot. We do, however, have electricity, bore water, phone, satellite internet and analogue TV. The Flying Doctor visits twice a month. Groceries must be ordered several days in advance from the nearest town 85km away, and then brought out by one of the locals.

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Challenges of Isolation Social contact with so few people spread out over such huge distances is difficult. Eight years ago, I had five very close friends living within a 7 / BRIDGE MAGAZINE

450km radius. Over time, all of them have since moved closer to Brisbane.

Life in the outback for a person with an Acquired Brain Injury (ABI) presents more challenges than someone with ABI living on the coast. You need to be well organised to arrange medical appointments, post, banking, and fuel and grocery supplies – mundane tasks that people in large towns would not think about. A brain injury can leave a person with ongoing medical problems such as pain, cognitive disabilities, memory loss, depression, social inhibitions and poor organisational skills, for example. These impairments can cause a sense of isolation even within easy access to facilities and people who are able to support one’s needs.

When ABI is coupled with the geographical isolation of living in the bush, however, these difficulties become even more disabling. A visit to a medical specialist nearly always requires a

long trip to the coast involving the coordination of transport, accommodation, services and funds. Prescriptions must be faxed days in advance to the Flying Doctor base 400km away so they can be flown down on the next visit.

Without a social or family network in town, making the effort to maintain ties with so few residents requires a great deal of bother which can become overwhelming. This is especially true if one has little in common with the inhabitants and therefore no reason to make contact. Living the life of a hermit becomes default. This is, though, an unhealthy lifestyle for anyone, but for someone with ABI it can lead to dysfunctional behaviours which could be threatening to health or even one’s life.

Isolated But Not Alone What options are there for somebody with a brain injury living in a remote community?

List of important numbers First is to have a directory of important phone numbers to call, such as emergency services (Flying Doctor, State Emergency Service, rural fire brigade, etc.), medical support, Lifeline, shops and tradesmen, friends and relatives. If you have mobile service in your area, it is a good idea to enter these numbers into your phone as well.

Note important dates on the calendar Next is to note important dates such as visits to (or from) medical or social welfare specialists, local social events, birthdays and anniversaries, for example. These need to be marked on the calendar. Some mobile phones have applications which allow these details to be recorded with an alarm set to chime on or before the day as a reminder, even when there is no mobile service. Post It Notes with important appointments and chores could be stuck to the bathroom mirror or fridge as a memory aide.

Keep provisions well stocked Keep fuel, groceries and prescription medicines well stocked in the event of bad weather or other disasters which could prevent delivery. In fact, as this article goes to press, the shocking news that our local store has burnt down has just reached us. Now it will be a 360km round trip to the nearest supermarket and petrol station.

Ask your doctor about obtaining a Regulation 24 (Reg 24) on all prescriptions so you can purchase in bulk. Make a perpetual shopping list with all possible items you might need over the course of the year. Simply check this list off each week when placing the order for provisions. Buy fuel in bulk, or go halves with a friend. If you use an LPG gas cylinder, have a spare ready. Make sure that you also have enough fuel to power generators in case of power outages. Natural disasters can cut communication services so ensure you have enough batteries to power torches, radios, portable fridges etc.

Maintain social contacts Plan to phone or invite over friends and

relatives two or three times a month. Suggest that you will call one week and ask if they could return the favour next time. In the bush, “doctor day” (Flying Doctor visits) is often a de facto social occasion, so even just passing by the clinic can be a casual way of making contact with others. If your area has internet access, check with your Brain Injury Association on what support services are available for people with ABI. For mental health support, Lifeline, Mood Gym, Beyond Blue and e-couch can help. Some larger rural towns nearby often have carer services available for people in the bush.

Centrelink or Blue Care can provide a list of the nearest locations to your community.

Find out if there are others in your area or on-line who share similar interests so it is possible to broaden your social contacts.

Internet social networking sites like Facebook or Skype allow you to find out what friends and relatives are doing and let them see how you are going. It helps to feel connected to loved ones and the world at large through sharing.

Eat well, exercise and have some hobbies It is good for both physical and mental well-being to exercise, eat a healthy diet and expose yourself to sunlight. Pursuing hobbies or interests are important for filling the day, providing one with a sense of achievement and satisfaction.

Hard work reaps rewards Taking time to organise the necessities of daily life lower the chances of a crisis occurring.

Putting in the effort to reach out might seem overwhelming, but its rewards are worthwhile and will keep you safe. Living in isolation does not necessarily mean you are alone. ◗◗ USEFUL ORGANISATIONS & SERVICES Centrelink: www.centrelink.gov.au Lifeline: Ph. 131114 or visit www.lifeline.org.au MoodGYM: moodgym.anu.edu.au Beyond Blue: www.beyondblue.org.au Royal Flying Doctor Service: www.flyingdoctor.net Blue Care: www.bluecare.org.au e-couch: ecouch.anu.edu.au/welcome The Brain Injury Association in your State (see page 2).

STEPS

by Ben Turner and Areti Kennedy (STEPS Program) Getting back into community life after a brain injury can be extremely challenging, and we all know that everyone needs a little support along the way. For some people who have experienced a brain injury, their families, friends and other social networks are able to provide the necessary support to help them get out and about in the community. For a variety of reasons, however, many people report that their support base is limited or that those around them don’t quite understand how they are feeling or what they are going through.

Over the past few years, the Acquired Brain Injury Outreach Service (ABIOS) has successfully implemented a new approach to establishing support-style groups for people with brain injury and their families called the Skills To Enable People and CommunitieS (STEPS) Program.

The STEPS Program is a community rehabilitation program that consists of two phases. First, the STEPS Skills Program is a structured 6-week interactive group program run by trained volunteer peer (e.g., person with brain injury or family member) and professional (e.g., health professional) leaders. The program uses a self-management approach and is structured to address three primary topic areas – (1) How I look after myself; (2) How I live in the community; and (3) How I work with services.

Upon completing the 6-week STEPS Skills Program, many groups go onto a second phase, STEPS Network Groups, which involves developing ongoing sustainable networks of support for people with brain injury and their families in their own community.

The STEPS Program operates Queensland-wide and is available to all people who have experienced a brain injury aged between 18 and 65 years, and their family members.

For anyone living outside of Queensland who would like to have a go at setting up their own brain injury support-style group, there are some lessons that can be learnt from the STEPS Program model.

• Structure for the group is important as it will help give the group a focus.

• Being organised will help the group run smoothly.

SUMMARY OF HANDY tips • Keep lists of essential services near your phone and in your mobile’s contact list • Mark important dates on the calendar • Use the apps with calendars and alarms on mobile phones to remind you of appointments or important dates • Stick Post It Notes on the bathroom mirror or fridge as reminders • Use a perpetual shopping list with everything you need • Keep prescriptions, batteries, gas cylinders groceries and fuel well stocked in advance and ask for a Reg 24 so you can buy medical supplies in bulk • Phone or visit friends and family on a regular basis • Maintain a healthy diet and exercise regularly • Pursue hobbies and interests • Join on-line interest groups.

• Support groups need support too. Harnessing support from local health professionals or service providers will help strengthen the group.

• Remember that everyone needs a little support. As groups grow and develop, it is important to evaluate whether or not the group is achieving the intended purpose for those who attend.

If you would like further information about the STEPS Program or advice about establishing a brain injury support-style group, you can contact the STEPS Program staff via emailing STEPS@health.qld.gov.au or phoning on 07 3406 2311. ◗◗

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The last three years Bob Westbrook had to rebuild his life due to homelessness, imprisonment and drug dependency after his undiagnosed brain injury

This is what I am in the process of living.

I had almost no family, thus no support.

Imagine waking up in a hospital bed not knowing where you were or how you got there.

When you try to talk to the nurse, she runs out and then others hurry in. This was my start, my awakening. I was asked if I knew my name along with other questions I did not know how to answer. This was just before Christmas 2001.

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My awakening Coming out of a coma is like coming out of a fog. It is a gradual, confusing process. It is not at all like waking up in the morning which is the way it is portrayed in the movies.

Memory loss is also unlike the amnesia portrayed by media. My best description of it is that it is like a ten thousand piece picture puzzle that is assembled. Then someone comes by and grabs large handfuls of the pieces. They throw some of them away and just toss the remainder haphazardly back on the table. I had enough small pieces, little snap shots, to have a limited concept of who I was. I just did not know where the pieces went, nor even the correct sequence of events. I now know that it is common for those with traumatic brain injury (TBI) to fill in these gaps – to confabulate and invent stories based on these snapshots. I have been, and will continue, finding and putting these pieces in their proper place. Because of this I have learned to stick to what I have recorded and can document.

My journey The journey to this point has been hard, yet 9 / BRIDGE MAGAZINE

fascinating. It is now clear that I have sustained several TBIs over the course of my life. Not once was a diagnosis made. No one around me had a clue why I had sometimes drastic personality changes.

Sometime around 1999 I had fallen in my warehouse and became a different person, according to my former secretary. I was given prescription oxycontin for pain. I was unaware that oxycontin is a highly addictive form of synthetic heroin. I’d also caught my second wife with another man, became depressed and moved out of my house into a little room I built in my warehouse. Everything began to fall apart fast. After catching one of my employees stealing, I pressed charges and he retaliated by having his father and wife claim to buy a computer from me that was from a burglary.

Everything fell apart As I watched my entire world crumble to dust, I gave up and sank into the escape of drugs and alcohol. In the middle of the jury trial I succumbed to my court appointed attorney’s constant encouragement to plead no contest. He suggested the judge would find me not guilty. I was convicted of receiving stolen goods and placed on probation. I was pretty much a basket case and was hospitalised when found in a parking lot crying and unable to give my name or address. I learned that my grandmother was sick and may die the day I signed my divorce. On the way to see her, I fell asleep after driving 24 hours straight. A month later, I woke up in the hospital.

Uninsured, the hospital worked hard to get me out. I was taught to walk despite the partial paralysis, and also taught to talk. This was done as quickly as possible and only to the point I could be signed out of the hospital. Then, just before they were going to escort me out of the hospital with only my hospital gown, someone showed up and said he was going to take me to St Louis. He was my brother, but I did not recognize him. Some of the hospital staff brought me their personal clothes and a pair of shoes to wear. I still intend to thank them for their care and love when I have the opportunity.

A brother tries to help My brother was poorly equipped to help me, mostly due to his alcoholism. I ended up being placed in an upstairs apartment with no heat and broken windows. This was in the middle of crack town where I was robbed twice and could watch gunfights, and just about everything else, out the window.

I finally came to the attention of the system after walking to a hospital for help because I had not slept in four days. A social worker helped me apply for benefits and food stamps after learning I was living on the $20.00 a week my brother doled out. I was taken to the Brain Injury Center where they began the process of determining my needs.

It was discovered that I had a warrant out for my arrest because I had violated my probation by being in a coma and not reporting. My brother had called probation in January when he picked me up from the hospital and was

told they were not worried. He still has the phone records. The Brain Injury Center called the court appointed attorney and he told me and them he would take care of it so I could get treatment.

Hope begins I finally began to have hope. A young couple in the church I was attending had opened their home to me upon learning my living conditions. I was getting the physical therapy and rehabilitation I desperately needed. Then during a traffic stop, the warrant appeared and I was extradited.

In court the judge immediately ordered an evaluation be made regarding my competency to stand trial. My probation was continued, and I was then asked where I would go when released. I said I would like to return to St. Louis where I was getting help. I was taken to a facility with a halfway house for those getting out of prison. There were tight controls, but for the first time I was allowed to go places such as the library. It was then, I first learned how much of my memory was gone.

I would walk roads I had travelled for 25 years and get lost. I started studying who I was at the library. Some of the staff taught me how to use the computer and get on the internet. I remembered having a fully networked computer system and web site at my companies but did not remember how to do simple tasks. It was fascinating to play detective and learn who I was and what I did.

Despite the fact I had once lived next door, it took me four days to find my former secretary’s house. When I knocked on the door and she answered, she just about had a heart attack.

She, like many, thought I was dead because the police had been looking for next-of-kin while I lay in the hospital.

She began calling people saying “Bob’s back from the dead!” As they came over to see me, I did not know what to expect. Many of the fragments of memory I had were unpleasant, and involved the insanity just prior to the accident. I had expected anger and bitterness but was grateful to hear the opposite. I met former employees who wanted to know when I was going to start my business up again so they could come back to work for me. One guy came in a wheelchair I had given him when he had

lost his leg. He told me that any time he needed a ride or help, he would just call my company. It was good to learn I was usually a good person.

Still a rocky road Back where I was living in the community program, things were not going good. I was confused much of the time, and highly stressed.

Drug use was rampant, with crack being manufactured in the dorms. While some of the staff were good, I saw much corruption. This included the theft of prescription medication, which was kept under lock and key.

I had been taught in St Louis to keep a journal to compensate for my short-term memory loss. I had been recording everything I observed. This included the heartbreak of seeing those who sincerely desired to become contributing members of society and be good fathers and husbands get caught up in drugs and go back to prison.

Unfortunately, one of the problems with TBI is a tendency to speak one’s mind without regard to the consequences. I voiced my outrage and even told the director he was running a drug house. They were aware of my journal and later it would mysteriously disappear.

Then I learned of my mother’s death. She had died January 12 and it was now April. One of the other common problems with TBI is heightened emotions, coupled with a reduced ability to control them. Now everything began to come to a head – my isolation, the injustice, my helplessness, anger and sorrow. I had repeatedly asked for help with no response.

Then, without warning, as I sat watching TV and writing in my journal, I was handcuffed and sent to jail.

Off to jail and then homeless I repeatedly asked what my charges were and why I was there. I asked everyone – the lawyer, the guards, the jail counselors. No one had an answer. Finally, after a month, I started a hunger strike on my birthday, and refused to eat or take the medication for my liver. On the fourth day, I was released and driven to another place – a church.

Unfortunately they are not at all what they represent themselves as. Upon learning I had food stamps I was driven to the grocery store where they spent the $119.00 I had. The next day I was told I could no longer stay there and

to pack and leave. All I had was a couple of pairs of pants and some tennis shoes with no strings.

Confused, I just walked to the railroad tracks behind my former warehouse and slept in an old concrete pipe. The next few months I wandered from homeless shelters to wherever I could find. I still kept my journal, and continued researching my past at the library.

Finally, I emailed channel 13 and they picked up the story of my memory loss.

Hope renews When the story aired, it was the start of hope being renewed. Finally, friends I suspected I had but could not remember, learned of my situation. One of them let me stay at his house which got me off the streets and away from the drug addicts. I finally was able to reduce the tremendous stress that enhances the effects of TBI to the point of me being nonfunctional.

Now comes the miracle.

One of the respondents to the TV show was Cherie, my first wife whom I had met in college. We had been divorced 20 years ago when I had exhibited a drastic personality change following a 30 foot fall which broke my neck and gave me a concussion. We now understand this was another TBI which was never diagnosed. We had never stopped loving each other, and had spent 20 years trying to fill the void left by the divorce. When I saw her for the first time in 20 years, I just cried like a baby.

I still get teary-eyed just writing about it. We will remarry soon.

I want the world to know what I have been through. It is my desire to raise awareness of TBI and thus impart some value to my life.

Please feel free to talk with us and do not hesitate to offer an opinion or advice. I am just seeking the truth, whether good or bad. ◗◗ Message from Lash and Associates Publishing Bob Westbrook’s experience is a testimony to the need to educate community programs, police, corrections officers and substance abuse counsellors to the signs and symptoms of traumatic brain injury. If you would like to receive a free tip card on Undiagnosed Brain Injuries in Youths and Adults, simply go to the free tip card offer on our home page and complete the request form.

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

Undiagnosed brain injuries AUTHOR’S NOTE: As I researched TBI at the library where the staff retaught me how to use computers and to go on the internet, I began to understand that I have had several TBIs in my life.

The first was as a child when my dad knocked me out. After that I began having out of body experiences. Then around 1972, I ran into a car on my motorcycle and broke my neck. Shortly after, I was in trouble with the law for reckless behaviour and anger. Then I fell from a tree I was cutting down, landing on my head and again breaking my neck and sustaining a concussion. My personality change was so drastic it resulted in a divorce. Then I fell in my warehouse, knocking myself out, breaking ribs, and again becoming a different person. I never had a diagnosis from any of these cases and still, when I explain I have a TBI to professionals, they are lost.

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Relationship problems & solutions

Close relationships typically go through phases of development with normal highs and lows in attraction, energy and enthusiasm.

Living in a close relationship with another person can be a source of comfort, support and fun, and also, at times, a source of distress, frustration and despair.

The fluctuations in relationship satisfaction are also influenced by other factors including tiredness, communication skills, problem-solving abilities, managing stress, and expectations for our own life and our relationship.

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Common Problem Areas In Relationships When problems occur in a relationship there can be a diverse range of reasons related to both individual problems and problems relating to patterns of interactions within the relationship. Individual problems that appear to place stress on relationships often arise due to individual needs being unmet. These unmet needs often arise due to dysfunctional patterns of interactions within the relationship.

Specifically, these dysfunctional interactions can include: • inability to communicate effectively • inadequate partner support • poor problem-solving skills • lack of quality time • a lack of positive enjoyable shared experiences.

Poor communication Poor communication is an area identified in practically all problems within relationships.

The way people talk (or don’t talk) to one another can cause a lot of distress and tension within a relationship. The following dysfunctional patterns are common: Demand-withdrawal: one person adopts a demanding, intrusive or pushy communication style and the other partner withdraws or refuses to communicate in response.

Negative emotion and labelling: a person uses lots of negative emotion such as anger and sadness to manipulate the other person.

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Labelling occurs when a person uses general/ global terms about their partner such as “lazy”, “stupid”, “annoying”, to describe them, as opposed to describing the behaviour they do not like.

Emotional invalidation and ineffective listening: a person does not use receptive body language and verbal feedback to show concern and understanding, and may be distracted from communicating by excessive noise or competing demands (e.g. television).

Poor problem-solving This is a critical skill necessary to generate effective solutions to the many daily problems that people living together in relationships have to face. Problems can include: organising schedules each day to get everything done, paying bills and budgeting, organising social activities and outings and making sure time is set aside for each other on a regular basis.

Common problems encountered when trying to problem solve include: Failing To identify the actual problem: Often we fail to recognise what the problem really is.

For example, in relationships often we think that our partner may not be very pleasant any more and may not like us when in actual fact the real problem may not be that but rather that they are not getting enough rest and there is a lack of quality time together.

Not thinking widely for all possible solutions before choosing one: Often we jump to conclusions about how to fix something without thinking about all the options. In relationships, sometimes one partner may think that a big holiday is needed to fix things and overlook little daily changes that could be made to bring about the same improvements.

Similarly we often think about ways to earn more money rather than cutting back on costly lifestyle choices.

Not discussing and involving our partner in selecting, implementing and reviewing

the strategy: Sometimes we try and solve relationship problems without involving our partner. We deny them the opportunity to be involved and share the process and may tend to blame them (or they blame us) when things don’t work out rather than working together on issues.

Inadequate partner support In order for a relationship to survive and flourish each partner needs to feel that they are receiving adequate support. Having these needs met is a combination of both having realistic expectations about your partners ability to meet your needs and creating and environment where they are aware of and able to meet your needs for support. Common problems in this area include: Having unrealistic expectations about your needs: It is important to be realistic in assessing what your needs are in terms of partner support.

Relying on your partner to meet all your support needs is likely to be unrealistic and place too much demand on your partner.

Placing unrealistic demands on your partner: Sometimes relationships become strained when one partner places unrealistic demands on the other and does not take into consideration their partners humanness. Our partners are only human, make mistakes, get tired, and have their own needs.

Failing to communicate and problem-solve to enable needs to be met: Often arguments occur when one partner is upset that the other has not remembered or done something which may or may not have been communicated effectively. In this case things get worse when communication and problem-solving is not used effectively to generate alternate solutions to meet needs.

Lack of quality time & shared experiences Lack of quality time and enjoyable shared

experiences is another area frequently observed in relationship dissatisfaction. In highlighting the specific area identified the following problems are frequently observed: Lack Of quality time: Couples often don’t plan ahead to ensure they get quality time together. When they do have time alone it is not “quality” as they are often tired and distracted and end up arguing or failing to enjoy each other’s company.

Lack of shared enjoyable activities: Another area which can cause problems in relationships is when couple’s don’t have shared interest which they can both participate in and enjoy.

Improving your relationship satisfaction: Some Starting Points There are several things you can do to begin the processes of improving your relationship.

Making changes to the way you and your partner relate and spend time together, and improving your skills in communicating and problem-solving can form the basis for marked improvements and gains.

Enhancing communication Communication provides the basis for either a great relationship or an average one.

Communication is a complex process with many skills involved in order to be successful.

Your psychologist is an expert is this area and has many strategies to enhance your communication, whether learning the basics or fine tuning your skills.

Remove all distractions when trying to communicate: Turn the television or radio off and remove distractions when trying to discuss things. If it’s not convenient to discuss things now then advise your partner and provide a time (soon) when you can discuss things.

Do not speak while your partner is speaking: Always wait until they have finished talking, and then if unsure or upset summarise back what you have heard and check for accuracy before you speak in reply.

Do not use blaming and labelling: Do not blame or label your partner as lazy, uncaring etc but rather focus on the problem behaviours.

Blaming will not achieve positive outcomes whereas identifying specific difficulties provides more of an opportunity for future change.

Build your partner up and use encouraging words when speaking: Always look for positive ways to discuss things and attempt to phrase things in ways that, whilst honest, also aim to build your partner up and encourage them

instead of putting them down.

Problem-solving: generating new effective solutions Problem-solving is a skill that whilst sounding simplistic can be very difficult to learn and even more difficult to apply properly when encountering difficulties. Here are some basic tips, and remember your psychologist can provide expert assistance.

Break down big problems into smaller ones and only solve one at a time: Some problems seem impossible because they are so overwhelming. In this case it’s time to break the problem down into parts and begin solving them one at a time in order or urgency and importance.

Think of all possible solutions before choosing the one you will use: Don’t forget to think through all possible solutions and strategies before you select one. Sometimes the unusual ones turn out to be the most helpful or may be needed later on.

Involve your partner and work as a team: In order to problem-solve relationship issues both partners need to be involved in order to have a sense of shared ownership in the process and shared responsibility in the outcomes.

Remember to ask your partner for their ideas and opinions and get feedback regularly.

Remember to focus on the positive and learn from each situation: If things don’t go exactly how you want them don’t just look at the negatives but also focus on the positives. What went well? Which aspects did work? What did you and your partner do well together? What could you do differently next time?

Promoting partner support Promoting partner support requires many skills and energy. Your psychologist is familiar with the complexities of understanding these issues and enhancing relationship satisfaction and meeting needs. A few strategies are outlined below to get you started in this area.

Take time out to identify what your needs for support are: If you don’t know what you want then it is unlikely you will get it. Take time to think about what it is your partner can do or be to assist you to feel more supported in the relationship. Keep in mind the need to have realistic and practical ideas in this area.

Communicate clearly to your partner your expectations and check they understand: When you know what you want or need make sure you can communicate this clearly with your partner and that they understand this both

five main problem areas • Inability to communicate effectively • Inadequate partner support • Poor problem-solving skills • Lack of quality time • Lack of positive shared experiences.

It’s easy to see why an Acquired Brain Injury can wreak havoc on relationships. Cognitive changes often affect communication abilities, problemsolving skills and the ability to empathise and see a partner’s point of view. Addressing these issues in rehabilitation will play a huge part in rebuilding a relationship after a brain injury. Go to the Synapse site at www.braininjury.org.au for fact sheets on: • Changes in relationships • Communication disorders • Self-centredness • Social skills deficits. in what you’ve said and how they can assist.

Be forgiving and patient as humans aren’t perfect: Remember that your partner is not perfect and can let you down for a number of reasons, ranging form simply forgetting through to being exhausted and tired or preoccupied. Maintain a gentle and forgiving attitude, and do not expect too much – that way you’ll be pleasantly surprised when things work out the way you had hoped they would.

Increasing quality time & enjoyable shared experiences This is an area you and your partner can work on together both as a couple and in conjunction with your psychologist.

Plan regular quality times and ensure the quality: Plan ahead with your partner to have time together when you are not tired or distracted and can focus on each other and enjoy the company. When having quality times stay focussed on pleasant topics and only discuss more difficult issues if you both agree to.

Make enjoyable shared experiences an ongoing growth area: If you have a lot of activities you both enjoy then continue to do these together, but also begin to expand or diversify your shared interests or deepen you understanding of the specific aspect of each activity that you partner enjoys the most. If you do not have many enjoyable shared activities then start developing a list of activities that you can try together. ◗◗ This article is reproduced with the permission of Psycare from their range of fact sheets at www.psycare.com.au

PSYCARE: CLINICAL & CORPORATE PSYCHOLOGY Psycare is a dynamic team of psychologists based in Brisbane, Queensland, providing corporate and clinical consulting services.

Corporate services include leadership assessment, coaching and development; organisational health audits; team development; wellness programs; grievance investigations; policy review, education and training; & early intervention, employee assistance, mediation and debriefing.

PsyCare Clinical & Community services include assessment, treatment, rehabilitation and support programs for adults, families, couples, teenagers and children across a range of common psychological problems. PsyCare works closely with private and GP referrals; worker’s compensation and CTP insurers; & disability, child and family organisations.

• Tel: 07 3839 4400 • Fax: 07 3839 4455 • Email: manager@psyhealth.com.au • Website: www.psycare.com.au 12 / B R I D G E M A G A Z I N E

Banged on a beanie yet?

Use your head to raise awareness of Acquired Brain Injury Brain Injury Awareness Week is now over, but the need to keep raising awareness of brain injury continues. According to Jennifer Cullen BANGONABEANIE’s spokesperson and CEO of Synapse, current figures dramatically bring home the need for Australians to be more aware of the risks they take, of the impact on the community, and the need for education and support services.

“Current statistics are so high, as are the complex needs of those people having to live with Acquired Brain Injury, so our Associations are striving to raise awareness and funds. This is to provide essential services to those affected, and promote prevention where possible” said Ms Cullen.

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Banging on about banging it on “The BANGONABEANIE campaign is in its inaugural year and the interest in the campaign has far exceeded our expectations,” said Glen Farlow, Synapse’s Marketing & Communications Manager.

BANGONABEANIE hit many communities in the lead up to Brain Injury Awareness Week, as locals from around Australia planned events, barbecues, morning teas, exhibitions and much more. Besides the online store, beanies were available directly from 79 outlets across Australia, including schools, hospitals, disability job centres, Brain Injury Associations and law 13 / B R I D G E M A G A Z I N E

firms. From Queensland to Western Australia, the BANGONABEANIE campaign generated a lot of interest and community activities.

The P&C Association at Canowindra High School in country New South Wales hosted a fundraiser and sold beanies to aid local school student James Roberts who acquired a brain injury last year. The BANGONABEANIE crew designed a poster just for James, and the local community printed and distributed them.

James will benefit from the funds raised to assist with rehabilitation costs.

Queenslander Mark Harris and his son Billy found out about BANGONABEANIE from the Royal Childrens Hospital. Billy acquired his brain injury three years ago whilst riding his BMX bike. According to his father it was touch and go for Billy for quite some time, and the accident has left him both physically and cognitively disabled. A major factor in his son’s constant improvement has been the constant support of his mates and friends who organised activities and fundraising events, such as Billy’s Birthday Bash at the local BMX bowl where they sold beanies to help raise awareness of ABI. The Neurological Rehabilitation Group (NRG), a local collective of private rehabilitation providers, became a Brain Injury Network partner and stockist of beanies, and also hosted a BANG-ON-A-BARBIE.

Jaime Gardner, the Manager of the Community Re-entry Program, Disability and Community Inclusion at Flinders University in South Australia held a Photography Exhibition at their local council library as well as a barbecue for Brain Injury Awareness Week.

While in the middle of their finals competition the NSW Womens’ Indoor Cricket Team proudly wore their beanies for all to see and during their finals dinner night held in Western Australia. Special thanks go to Raelene York from the local Brain Injury Association, HeadWest, for supplying the beanies to the 12 team members. HeadWest themselves presented a Trash n Treasure fundraiser. the BANGONABEANIE launch The BANGONABEANIE launch took off at the Turbine Platform of the Brisbane Powerhouse, New Farm, in early August.

The event commenced with a Traditional Welcome to Country and launch ceremony followed by an expert Q&A discussion panel. Afterwards guests enjoyed the free entertainment from local bands who donated their time, as well as live music, information booths, a multimedia presentation, a guest DJ and a prize giveaway.

Bikers bang their beanies on The Upper Coomera Cruisers, a local group of motorbike enthusiasts, came together

Rachel Merton (EO of Brain Injury Association of NSW) with Jonathan and Cheryl Koenig, BANGONABEANIE Ambassadors for a memorial ride in honour of Bernie Smith, a member that lost his life in a motor vehicle accident four years ago. This ride also marked the club’s decision to support Brain Injury Awareness this year through the BANGONABEANIE campaign.

Motor vehicle accidents are the most common cause of ABI in Australia (40%) and motorbikes represent a large percentage of this figure.

Known as a cautious motorcyclist, Bernie Smith died after sustaining severe injuries when his motorcycle and a car (driving on the wrong side of the road) collided at Oxenford in Upper Coomera. So supporting ABI awareness takes

on special meaning for Upper Coomera Cruisers club members. Andy Hannah President of the Upper Coomera Cruisers, took part in the ride which saw over fifty members wearing blue beanies with some riders wearing their blue beanies over their helmets.

“Each year the cruisers choose a local charity to benefit from our fund raising activities, this year we are happy to support Synapse,” says Andy. jt is an indigenous ambassador Johnathan Thurston (JT) – famous halfback for the NRL’s North Queensland Cowboys – has agreed to lend his image for

brain injury awareness. His poster will be distributed to Aboriginal and Torres Strait Islander communities, to Community service providers and to other key stakeholders located in the Far North of Queensland. He is a hero to many Aboriginal and Torres Strait Islander communities and an inspiration to Indigenous youth.

“Synapse sends our sincere thanks to JT in agreeing to become a Synapse Indigenous Ambassador,” said Jennifer Cullen, Synapse CEO. “The young-uns who we provide support to will be thrilled to know that their hero will be a face of Synapse, by JT lending his image to Synapse’s ABI awareness poster he will help us strive to open-up awareness within Indigenous and non-Indigenous communities.”

Jennifer Cullen, herself a descendant of the Wakka Wakka people of Cherbourg Queensland, has been concerned about the high incidence of Acquired Brain Injury occurring in Aboriginal and Torres Strait Islander communities for some time.

Indigenous youth (particularly young men in the 15 to 25 year age group) are among the highest risk group and this is the group they wish to target particularly.

Copies of the poster are available from Synapse’s Community Response Service team.

Email info@synapse.org.au or call Synapse on 07 3137 7400 (freecall 1800 673 074 if outside Brisbane). For more information contact: apetrou@synapse.org.au ◗◗

New brain injury videos for brain injury awareness The popularity of online videos means this is a great way to spread the message. You can view personal stories, tv ads, awareness raising clips, rehabilitation professionals talking about brain injury and BANGONABEANIE promotions. Chekc out the Synapse Youtube channel at www.youtube.com/user/SynapseReconnect and share these videos with everyone you know to get the message out there!

Cheryl Koening, NSW Woman of the Year 2009, talks about the trials and hopes of being a carer.

Jo Lake, Indigenous ambassador for Synapse, shows courage and determination in recovering from a brain injury

Five part series with rehabilitation professionals discussing strategies for maximising recovery from a brain injury

30 second TV commercial for the BANGONABEANIE shown nationally during Brain Injury Awareness Week

Film clip from rockin’ Brisbane band Trip Sinister promoting awareness of brain injury live and on-stage!

Video clip for promoting awareness of brain injury and need for appropriate helmets in action sports

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Self-advocacy for beginners

Advocacy is often needed when supports and services for acquired brain injury are so minimal. Here is how to advocate for yourself when no one else will do it for you.

Advocacy is often needed when supports and services for acquired brain injury are so minimal. Advocacy is about justice and the fundamental human needs, rights and interests of everyone, but particularly people with a disability.

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When is advocacy needed?

Typical situations that require advocacy are: • Other people (including service providers) have an obligation to you that they are not fulfilling • Your rights are being ignored or violated • You have a responsibility that is particularly difficult for you to carry out • You are being misunderstood or are having trouble understanding others. finding an advocacy service Occasionally you can find advocacy services 15 / B R I D G E M A G A Z I N E

who will advocate on your behalf, but in these days of scarce funding you will often have to do this for yourself. Check with the Brain Injury Association in your State. An example in Queensland is QADA (Queensland Aged and Disability Advocacy), an advocacy service providing information, education, support and representation to enable people to understand and exercise their rights and their responsibilities (ring 07 3637 6000). self-advocacy If you can’t find an advocacy service to advocate for you, then it is time to do it yourself. Though the following plan is not specific to any particular type of advocacy, these techniques are based on educating rather than directing. Work through each step as they are presented before moving on to the next one.

Remember, this is only a guide, so use your best

judgement when planning to self-advocate.

1 What do you want to advocate about?

The first step in this process is to clearly identify what your goals are. You may have more than one goal; however it is important to remember that all your goals should be specific around the issue you are advocating.

Make sure you write down things as you go so that you don’t forget anything and you remain focussed on your task. Having a goal is essential when you are self-advocating so that you have something to work towards. It also means that you have a sense of achievement once you reach that goal (and so you should!).

Another step that may be useful is to gather as much information about the issue as possible (this may be paperwork, notes, receipts, or other general documents). This will not only help you keep focused and motivated on your

goal(s), but may be useful during the advocacy process. Again, make sure that any information or documents you have are specific to the issue you are self-advocating about. You may want to read through the information again to make sure you are familiar with it.

So now you have set your goal(s), but if you are going plan effectively you may need some more information. It may also be beneficial for you to have a strategy and some evidence.

A strategy is a list of details related specifically to how you will achieve that goal or desired outcome. Evidence relates to the information or proof that will let you know you have actually achieved that goal or outcome. This format for planning not only gives you a comprehensive tool for self-advocating, but also the best chance at being able to achieve your goals. Don’t forget to check off each goal as you complete it.

2 Who do you need to speak to?

Who you actually need to talk to resolve an issue can sometimes be very confusing. If the reason you are advocating is because of a particular organisation, then you should contact that organisation first to start the resolution process. Remember, you must always give the service provider or organisation a reasonable opportunity to resolve the issue.

It will be helpful to become familiar with the complaint process of the organisation you are dealing with.

In some cases you may not have been previously dealing with a service or organisation.

The issue in this instance may be that you are not able to organise a vital service, or you have not received some information that you really need. You may have to contact a Government Department or an independent organisation (such as a Union or specific Advocacy group).

If you are not sure who to contact, please click here to view a list of contact details in specific categories to assist you in finding the most appropriate service. If the people you call can’t assist you, make sure you ask them if they know of anyone who can.

Always remember to make notes of the names of people you speak with, what you spoke about, and the date you spoke with them.

Keep these notes somewhere safe along with any other information you may have gathered.

3 What do I say?

What you say or write to an organisation

or service provider is very important as it may influence how long the advocacy process takes.

Make sure that you focus on your goal and are as specific as possible. If you are going to speak with someone on the phone about your issue, it may be helpful to write down what you are going to say before hand. If you are going to write a letter or an email, make sure you read through it a few times to make sure it is clear and to the point.

State clearly the issue you are talking about and indicate what action you think should be taken to resolve it. Make it clear that you are giving the service provider or organisation a chance to fix a mistake or omission if that is the issue.

It is important to remember that although you may be upset, you should always be polite and keep your cool. State your case calmly, clearly and confidently. If you find that the situation is becoming too much, calmly tell the person you are speaking with that you will call them back later and hang up.

Always remember to ask if you are unsure about anything (or you need something clarified), there are never any stupid questions!

4 What if I need someone else to assist me to advocate?

Why would you need anyone else to speak on your behalf? Depending on the issue you are dealing with, you may need a professional to communicate your views to the organisation you are dealing with, or assist you to organise a service. For example, if a medical issue is involved, a doctor may have to write a letter or speak with someone directly for the advocacy process to continue or for a service to be implemented. Don’t ever feel bad if you wanted to advocate purely on you own and you had to involve someone else, sometimes it is the only way to resolve an issue; it in no way means that you have failed.

Getting assistance from a family member or close friend is another good way to self-advocate if you are having trouble getting your point across. Your family and friends often know your situation well and they can work with you to achieve your goal.

5 How do I make contact?

There are several different methods you can use to self-advocate; phone, email, letter, fax, or the media. Choose the method that best

sELF-ADVOCACY tips • Keep all relevant records and documents • Record important information during phone conversations • Ask for the company’s policy and procedures on complaint resolution • Remain calm and specific to your goals when dealing with people • Ask to speak to someone higher up if responses aren’t satisfactory • Ask if there is an external agency that can help resolve the issue • Keep trying… never give up.

suits you, or the one you feel most comfortable with. Remember that the way you raise your issue will be different from place to place. Some organisations will only accept letters.

STEP 6 How do I tell if it’s working?

Hopefully after Step 1 you have completed a plan of how you are going to self-advocate i.e. your strategy, evidence and goals. The best way to evaluate how you are going with the advocacy process is to take some time and review your plan. If (for a specific goal) you have completed the strategy and you now have your evidence, then you should have completed your goal, congratulations! If you feel that your goal is completed, make sure you check it off your list. This will not only give you a sense of achievement, but also prevent you from doing any additional, unnecessary work.

You may however, not feel as though the goal has been completed, even if you have done the strategy just as you outlined. If this is the case, then you should go back and review the strategy, evidence, and goals you have set yourself. It may be a matter (especially after you have now had some experience) of redefining some of your strategies or evidence to better suit the goal you have. You might have found that the strategy you identified does not work or is not practical and you may need to make some changes. Additionally, you may find that the goals you have previously set are too big or too broad. If this is the case, you may need to re-evaluate your goal and break is up into smaller, more manageable goals. The benefit of this is that you have a more realistic idea of how you are progressing, and you should know a lot earlier if things are not going according to your plan. ◗◗

Queensland Aged and Disability Advocacy (QADA) Inc. If you need advocacy services in Queensland, QADA can help to create a level playing field by supporting older people, people with a disability and their carers to be heard. A not-for-profit community-based Statewide advocacy service, QADA can provide information, education, support and representation to enable people to understand and exercise their rights and their responsibilities. Our service is client-directed, free and confidential. An interpreter can be arranged where necessary.

• Website: www.qada.org.au • Ph: 07 3637 6000 • Email: info@qada.org.au To find advocacy services in other States, please check with the Brain Injury Association in your State.

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Positive ways to manage behaviour

Useful tips from the Acquired Brain Injury Outreach Service (ABIOS) The following ideas will generally help in preventing and managing behaviour changes, and will help in providing positive support to a person with an Acquired Brain Injury (ABI).

There are no strategies that are guaranteed to eliminate or stop behavioural issues altogether, because they may occur as the result of damage to the brain. But the following strategies may help in reducing or minimising the frequency and severity of challenging behaviour.

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Understand the causes of behaviour Get information about the brain injury and the effect the injury has had on the person’s behaviour. Become aware of any specific behavioural issues or changes, and any specific causes or triggers for behaviour. Examples are: • their personality style e.g. always had a bad temper • habits, preferences and difficulty making adjustments • social and communication skills that may be reduced as the result of the injury 17 / B R I D G E M A G A Z I N E

• damage to areas of the brain that can directly cause behaviour problems • difficulty coping or adjusting to disability e.g. frustration, anger • reduced insight and self-awareness of behaviour as the result of brain injury • social factors and stresses that impact on behaviour – inability to work, drive, live independently, changes in relationships, physical functioning, leisure and social activities • medical factors e.g. medication, pain, fatigue, or headaches can cause or worsen behaviour • Relationship issues, losses or conflict with others that may affect behaviour • Environmental factors e.g. noise, too much activity, living situation which can affect behaviour.

Give positive choices People will behave better if they have meaningful daily activities, experiences and choices.

Plan for successes and achievements to build confidence, and focus on increasing the person’s self-worth, confidence and pride in themselves. Plan for interactions and relationships that are positive and rewarding.

Have realistic expectations Have a good understanding of the person’s strengths and areas of weakness. Make sure you compensate for any cognitive problems they may have: • Attention and concentration • Memory and learning • Reasoning and problem-solving • Planning and organisation • Understanding • Communication and social skills Understand what you can and can’t change.

Support the person to change where they can.

Set tasks and goals that are within the person’s ability – not too easy, not too hard.

Don’t expect more from person than is possible – unrealistic demands create stress and stress worsens behaviour.

Be realistic with yourself – you can’t do everything.

Have a routine and provide structure for daily activities and tasks. Let the person know of any changes that are coming up, so plan ahead. Having structure is important – have things organised and try to be consistent.

Set clear limits Have clear rules and limits about what is expected (in terms of behaviour) of the person and of you – what you can do, and what you can’t do. Talk about the way things might work and set limits early. Also set the rules or limits clearly – talk about them and write them down.

Review and repeat the rules when you need to Don’t make rules or set limits that you can’t stick to. Be clear about your role/job early – what you do, what you don’t do.

Let the person know what is expected of them (what behaviour is okay, what behaviour is not okay) and why. Don’t just impose inflexible rules.

Improve communication Listen to the person. Let the person know what you are doing and why.

Get to know the person and their likes and dislikes. Support the person to set and achieve their goals and dreams.

Find topics and activities that interest and motivate, and provide as many choices as possible – this encourages independence and a sense of control.

Take into account any difficulties the person may have with understanding what you expect of them.

Give and accept feedback Feedback should be clear, direct, and immediate. A person can’t change if they don’t know what the problem is.

Feedback should not be critical or punishing, so give positive feedback and encouragement – people learn better when they know they have done well, and when they feel supported.

Positive feedback can build a relationship so practice giving compliments, and notice positive things about the person and their behaviour.

Admit when you have made a mistake – apologies go a long way to building bridges.

Stay calm Keep calm and model the behaviour you expect from the person with brain injury – if you can’t stay calm, why should they? Angry or irritable behaviour from you is likely to produce angry or irritable behaviour in someone else.

Don’t take what the person says or does personally – it isn’t just about you.

Check your own behaviour – be aware of the connection between your mood and behaviour, and how that affects the other person. Think about: • what you say • your tone of voice • loudness of your voice • body language • facial expression • how you feel • what you are thinking.

Be respectful Treat the person like an adult in the way you speak to them, and the way you give choices in your expectations about behaviour.

Involve the person in decision making – most people don’t like being bossed around, or being told what to do. Discuss their options and alternatives and then let them make real choices. Find out what they like and dislike – don’t push your own ideas.

Be polite, even when the person is rude to you.

Redirect and shift focus Ignore behaviours you know are unlikely to change e.g. swearing, gestures, facial reactions – carry on activities as if these behaviours are not there. Redirect or distract the person to another topic or activity – make suggestions, direct the person’s attention elsewhere or try something different. Be creative!

Use a sense of humour to break the tension and redirect the conversation onto something different. Use brief periods of time away from an activity, plans breaks and change activities. Wait until things calm down and try again later. ◗◗ This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ The Acquired Brain Injury Outreach Service is a rehabilitation service assisting people with Acquired Brain Injury in Queensland, their families, and carers. Ring ABIOS on 07 3406 2311 or email abios@health.qld.gov.au

MORE FACT SHEETS ON BEHAVIOUR ABIOS has other fact sheets on their website. Visit www.health.qld.gov.au/abios for: • Brain functions and changes in behaviour • Behaviour intervention techniques • Giving feedback about behaviour • Cognitive & behavioural changes & strategies • Insight and self-awareness after brain injury • How to respond to angry behaviour • Preventing and managing anger • “Me, me, me”: Understanding egocentricity

• Understanding behaviour changes • Positive ways to manage behaviour • Frequently asked questions about behaviour • Impulsive Behaviour • Understanding emotional lability • Understanding adynamia & lack of motivation • Disinhibited and inappropriate behaviours

Synapse Training expands Synapse Training has grown and recently welcomed on board their new Training Coordinator, John Fletcher, to the team. The team is now half way through the state-wide ‘Changing Behaviour for the Better’ seminar series, has a number of strategic partnerships in the pipeline, and continues to receive positive feedback.

In Synapse travels across regional parts of Queensland they are finding that the challenges that arose with recent floods have not dampened the spirits of those working in the human services sector.

Training Manager Grant Blest and the team’s new Training Coordinator John Fletcher are busy working in tandem delivering training from their full range of courses across Queensland.

John recently returned from delivering training in Mackay and is assisting as co-facilitator for their ‘Changing Behaviour for the Better’ program as well as building partnerships with key stakeholders.

“I have also worked in the disability field as a support worker, a job that has brought me great rewards and many challenges, said John.

“One of the greatest rewards of training over the past 18 months has been to see long-term unemployed people gain skills to re-enter the workforce and, as an end result of training, see them gain (in the main) full time employment – many of them in the HACC and Disability areas.”

For more information email Synapse Training: training@synapse.org.au

Dates for Synapse Training seminars These will take place at West End, Brisbane: Understanding Acquired Brain Injury • 9.00am – 1.30pm ,14th October 2011 • 9.00am – 1.30pm ,25th November 2011 Positive Behaviour Support 9.15am – 3.30pm, 18th October 2011 9.15am – 3.30pm, 29th November 2011 Supporting Individuals with Complex and Challenging Behaviours 9.00am – 1.30pm, 19th October 2011 9.00am – 1.30pm, 30th November 2011 The following Corporate Training seminars are conducted as requested by organisations: • Understanding Acquired Brain Injury • Positive Behaviour Support • The Effective Support Person • Manual Handling • Supporting Individuals with Complex and Challenging Behaviours • Writing Behaviour Support plans ◗◗

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In memory Leanne Curtis talks of the hope, grief and pain following her husband’s brain injury It was the June long week-end, 2000.

My dear husband was 39 at the time. We had a special relationship and three lovely children aged three, seven and nine. He was a linesman for the local electricity company when he had a work accident due to equipment failure. He came home with a severe headache and vomiting. I raced him to the doctors where he had a grand mal seizure. He was rushed unconscious to hospital in an ambulance.

A CT scan revealed that he had a massive brain bleed from a pre-existing AVM (arterial venous malformation) which had been triggered by the fall. Soon, he was on his way to the Royal Brisbane Hospital in a Careflight helicopter. When we arrived six hours later we were told he most likely wouldn’t survive. They gave him only a one percent chance of survival.

It was touch and go in the intensive care unit for two weeks.

He was in a coma. The only way I knew he was ‘there’ was that he ever so slightly rubbed my thumb with his finger as I held his hand. He finally ’woke up’ and began four long months of intensive therapy at two hospitals. He had to learn to talk, walk, eat and write all over again. It seemed like two steps forward and one step back and sometimes two steps back, but we are forever grateful to the staff who cared for him then.

It was the longest and most difficult time in the life of our family. Our children were cared for by relatives and close friends. For six months, I spent all my time with him with the wonderful help of his mum and dad. I lost all sense of reality during that time, leaving friends at home to get the mail, pay the bills, and mow our property. Finally Ken came home for Christmas, although he went back for a further few weeks to complete rehab.

It was very hard as Ken realised he could not return to work or drive for now. This came as a huge blow for a man who had been very active all his life, working two jobs, motorbike riding, windsurfing, camping, four wheel driving, and pushbike riding 30 000km over a few years to raise money for various charity groups.

Now he was totally dependent on Centrelink for a disability pension and his wife to drive him around. We did physio and occupational therapy at the hospital, went to the pool, and volunteered at Meals on Wheels to help

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strengthen his physical and mental state. Then it was on to the Commonwealth Rehabilitation Service to work through psychological problems (loss of job and sense of worth) and trying to get back into the workforce in some form. He also had driving lessons and got his licence back after three years.

A friend in business let him come in and work for him, helping with paperwork and other things. He mostly enjoyed the social interaction of customers coming in – he would sit down and talk to them. Another mate took him to the gym regularly and others on outings. He spent

a lot of precious time with his mum and dad.

We joined the brain injury support group and began to enjoy the company of others who had been through similar experiences. We shared stories, laughed, cried; they became a special part of our lives, some very close friends to this day. Ken had a great outlook on life and made the most of every day.

At the end of 2004, we went on a wonderful family holiday together with my parents, and my sister and her family. What a fantastic time we had travelling around Central Queensland, sitting around campfires at night, sharing, singing and laughing. They are precious memories now, as early in 2005, just a few days after his 44th birthday, Ken suffered a second brain bleed, and was unconscious as the ambulance came and took him to hospital.

It was all so similar to the first occasion as this time he was flown to hospital by the Flying Doctors while we followed in the car. This time was worst than the first.

A massive brain hemorrhage had left him brain dead with no response and his

life support was turned off three days later.

The harshest memories are watching my children (by now seven, eleven and thirteen) say their goodbyes to their dad in hospital. Life is cruel at times and so very unfair. He was such a wonderful dad, loved life and playing with his children. He would use his work-free days to do reading at their school. He had answers to every question they asked, and a knowledge of so many things that left me speechless at times.

He had a love for creation and its Creator. We lost so much that day.

For a year I went through grief, incredible anger, bitterness, blame, and solicitors’ appointments to find justice – we had failed to win a workers compensation case as the medical assessment tribunal determined that he had a preexisting ailment which could have ruptured at any time in his life. Our children (mainly the two eldest) also went through long states of tears and anger, and eventually we all sought counselling to help us through.

After losing Ken, I cut myself off from our support group and didn’t want anymore to do with it, but after a time of healing I realised that I didn’t want what Ken had gone through, and the experiences and knowledge we had gained, to be wasted. I returned to our support group to help and encourage them because ‘I had been there too’.

Today, now six years later, I have been running the support group for four years and we have run two STEPS programs for people with a brain injury. I am very grateful to Areti at STEPS and our previous coordinator Nene who have stood by me through all of this. We have a wonderful bunch of people who meet monthly for social and informative days. I have since remarried, am happy, and now work full time in our tyre business. My eldest son recently married and both sons work for us – as they grow up I see so much of their dad in them physically and their mannerisms. I have a beautiful 13-year-old daughter who reminds me so regularly how much she loves me. All these things have helped lead to healing. Not a day passes though, without memories and sometimes tears as I remember, but I am getting there because of the strength and support of a wonderful network of family and friends, my church and a faith in God. ◗◗

Sensory & perceptual skills

Sensory and perceptual problems can arise from damage to the right side of the brain or the parietal and occipital lobe region.

The parietal and occipital lobes of the brain integrate the input from different senses. For example, the senses involved in recognising an apple may include touch (firm, spongy and smooth), sight (red or green, round, spotty, large etc.), sound (crunching and chewing), smell (fresh or rotting) and taste (a granny smith versus a red delicious, sweet or tangy).

The effects of brain injury may involve a range of sensory and perceptual problems which are often described according to the sensory perceptual system involved. These systems include: • Auditory (perception of sounds) • Visual (perception of colour, shape, size, depth and distance) • Tactile (the perception of touch relating to pain, pressure and temperature) • Olfactory (perception of smells) • Gustatory (perception of taste).

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A closer look at visuo-spatial skills While deficits may occur within each sensory system, the area of visuo-spatial is often more dramatic. Visuo-spatial deficits may include difficulties in the following areas: • Drawing or copying objects • Recognising objects (agnosia) • Telling left from right • Doing mathematics (discalculia) • Analysing and remembering visual information • Manipulating or constructing objects • Awareness of the body in space e.g. climbing stairs • Perception of the environment e.g. following directions.

People may experience selective difficulties or several deficits depending upon the nature of their injury. One well known syndrome involves neglect: The person ignores certain aspects on one side of the world in front of them, which is most typically the left hand side.

For example, a person with neglect may ignore food on the left side of a plate or fail to copy aspects on the left side of a picture.

Managing visuo-spatial problems The presence of neglect may be undiagnosed despite significant safety issues. People with neglect are often unaware of their problems and tend to use other explanations for the mistakes caused by the neglect. A key component of rehabilitation is therefore to educate the person and increase their awareness of the impact of the perceptual deficit in everyday living. Further components to a program for managing visuospatial problems may include retraining skills, changing the environment or expectations, or compensatory strategies.

Retraining skills One approach involves retraining the skill until the person regains, in varying degrees, the functional skill. Retraining typically involves repetitive and intensive exercises for a specific skill or task e.g. practise at drawing an object while receiving feedback. This approach tends to be more effective with specific skills.

Changing environment or expectations A second approach involves modifying the environment to provide more support or reduce the demands of a particular skill. One example may involve building a ramp or fitting a handrail for a person who finds it difficult to climb a flight of stairs to their house. Sometimes, the

change in the environment can be as simple as shifting furniture to ensure greater space when walking around the house. The person may also learn to adjust their expectations and educate other people about their difficulties.

Compensatory strategies People often learn or may be taught a range of strategies to compensate for visuo-spatial problems. These strategies may be as simple as a person learning to turn their head or body to scan their environment, or moving objects into their ideal position. A range of specialised technology or equipment may also be available to fit into a person’s home or assist with community access. Some external prompts may include colour stickers for object recognition, bright lights on the floor, musical or sound prompts, stencils or transparent paper for copying, hand rails and other safety devices.

An example of a compensatory approach for object recognition involves the person learning to rely more upon other senses such as touch, hearing and smell. They may choose to shut their eyes to avoid inconsistent information from the visual system. The rehabilitation strategies described may be developed by a neuropsychologist, occupational therapist or physiotherapist. The eventual goal of the program is greater independence and use of self-management strategies. However, family members, friends and support workers can provide valuable support and reinforcement of rehabilitation techniques. ◗◗ This is an excerpt from our comprehensive publication, Acquired Brain Injury: The Facts. It is available for just the cost of postage within Australia, and can also be downloaded for free from www.synapse.org.au 20 / B R I D G E M A G A Z I N E

Between the sheets Adjustable beds, transfer equipment, ulcer prevention and pressure cushions for people with catastrophic brain injuries

A severe to catastrophic brain injury may mean that a person will be spending much of their time in bed. It is very important to select the right sort of bed and supports, and minimise the chances of bed sores.

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SELECTING AN ADJUSTABLE BED When selecting an adjustable bed it is important to consider the needs of the individual. There is a range of beds on the market with a variety of options and accessories to meet an individual’s support, comfort and functional needs.

Bed adjustments An adjustable bed may incorporate one or allow of the following adjustments: Height adjustment: also called hi-low function enables the bed height to be adjusted.

This may be needed to assist transfers or for carer tasks such as changing bed linen or nursing someone in bed. Some beds have an extra low height adjustment.

Backrest adjustment: This may be used to support the user in a semi-sitting position or to assist the user from lying to sitting.

Knee break adjustment: This function elevates the knees without elevating the feet.

This may be used to help prevent the user sliding down the bed.

Leg elevation: This elevates the users legs from the hip and may be used to help prevent 21 / B R I D G E M A G A Z I N E

or reduce leg swelling.

Trendelenberg or reverse Trendelenberg: This feature allows the entire bed to be tilted towards the head or towards the feet. This may be useful for individuals with a range of medical conditions such as circulatory problems, breathing difficulties or reflux.

Companion beds These are two beds that can be placed directly beside each other. Depending on the needs of the users, both or only one of the beds may be adjustable.

Accessories Accessories may include: - Bed rails - IV Pole - Built in massage - Removable head board - Self-help pole - Bed extensions - Alternative controls - Removable foot board - Battery backup

- Voice activation.

Other considerations Adjustable beds may be manually or electrically adjusted. Electrically adjustable beds have a hand-help controller and allow the user to adjust the bed while they are in it. Manually adjustable beds tend to use a footpump or hand-wind mechanism. Some adjustable beds can be folded for transport and storage.

More adjustable beds are on castors to allow the bed to be repositioned. Most also have locking castors which may be individual locks or a central locking mechanism. Directional castors on some beds may assist in steering the bed in one direction. Beds are available with different load capacities. It is important to consider the combined weight of the user and mattress when checking this specification.

Different beds have different clearance space under them. This is important to check if the user will be hoisted in and out of the bed.

Mattresses suitable for adjustable beds Mattresses for adjustable beds are specialised

as they need to be flexible and able to bend with the movement of the bed. They come in a variety of types including: Inner spring: The most common style of mattress. They consist of padding over springs (which support the user’s posture while they sleep). Manufacturers recommend this type of mattress should be replaced approximately, every 10 to 13 years.

Latex: These can be firm, and it is not known whether they offer the same postural support as an innerspring mattress. Latex mattresses can be a better choice for users who are incontinent.

They can also be a good option for older people, as they do not have to be turned as regularly.

Foam: Foam mattresses are generally lighter and easier to flip and turn. Many foam mattresses are now covered with a waterresistant two-way stretch covers that can protect the foam from incontinence as well as assisting with pressure care. Different densities and combinations of foam further improve the pressure care qualities.

Pressure care mattresses: Some users at risk of developing pressure ulcers require a mattress that provides a high level of pressure care. These are available as either an overlay that lies on top of an existing mattress, or as a complete mattress replacement system.

Bed Transfer Equipment Some people have difficulty getting in and out of bed, or repositioning themselves in bed.

Other people may be unable to move themselves in bed at all, and require the assistance of carers. There is a variety of devices that can assist individuals to transfer or reposition independently, as well as aids to assist carers to reposition as individual in bed.

Self-help devices Raising the bed on bed blocks may make it easier for the user to stand from the edge of the bed. A bed ladder attaches to the foot of the bed and allows the user to pull up from a lying position by pulling up on each rung on the ladder. Rungs can be grasped with the hand, or the whole forearm can be slid through the run for extra leverage.

A bed stick provides an anchor point for people to grasp to assist them to turn in bed.

These devices are placed between the mattress and the bed platform. Care must be taken to ensure that the device is properly fitted and secured. Some bed sticks protrude upward from the bed base to be in line with the mattress top.

Other designs extend above the mattress level.

A self-help pole, which is often known as a monkey pole, consists of a metal pole at the head of the bed with a chain and triangular handle which hangs above the user’s head.

These poles can be helpful when a person needs to lift themselves up from the surface of the bed.

Some people find them difficult to use, as they

require substantial upper body strength.

Slide and self-turn tubes can be used by people to assist to turn themselves over in bed independently. These are made of nylon materials, which provide a slippery surface therefore allowing the person to turn more easily.

Leg lifters are designed to help a person lift their legs in or out of bed. More complex electrical inflatable leg lifts are also available.

An electric bed with an adjustable backrest can also be used to assist someone who has difficulty moving in bed to get from a lying to a sitting position.

Equipment to assist carers Sliding is often one of the easiest ways for a carer to reposition an individual in bed. There is a range of sliding aids designed to assist in this task. These include: • Single thickness slide sheets are often nylon, and designed to be doubled back on themselves. The helper bunches the corners to get a grip.

• Tube-type sliding aids, where the material is sewn end to end, provide a slide movement sideways or up a bed depending on the placement and size of the material tube.

More complex aids, that also minimise friction and prevent bunching of material under the user, include semi-rigid transfer aids with a flexible sheet of plastic inside a padded cover and air-filled mats. Both come with handles to assist with pulling.

Pressure Ulcer Prevention Pressure ulcers are also known as decubitus ulcers, bed sores and pressure sores. Prevention of pressure ulcers is very important. Once a pressure area has developed that area is then more at risk of a second pressure ulcer developing. Pressure ulcers can happen very quickly, within 10 to 20 minutes in some cases. They can be very painful and costly, both emotionally and financially. Pressure ulcers are easy to prevent but difficult to treat.

What is a pressure ulcer?

A pressure ulcer occurs when the skin and tissue underneath breaks down. This may be caused by constant pressure on the one area.

The first sign of a pressure ulcer is a redness of the skin. This can then develop into a broken skin area that looks like an abrasion, pimple or blister. Eventually, if unchecked the pressure ulcer can destroy the underlying tissue, tendon, joint and muscle to leave an open wound down to the bone.

Risk factors A number of factors influence the likelihood of developing a pressure ulcer: • Inability to regularly change position – immobility, being restricted to either sitting or lying down increases pressure especially over bony areas.

The Roho Dry Flotation mattress is an air mattress that provides high pressure relief • Dietary intake – dehydration, oedema, weight loss or obesity and poor diet affects the health of the skin.

• Moisture – skin remaining damp due to perspiration, urine and faeces can contribute to the breakdown of the skin surface.

• Poor circulation – skin receives less oxygen and nutrients leading to skin breakdown.

• Alteration in sensation – may not feel discomfort and pain or the need to change position.

Preventing pressure areas • Check daily for reddened areas of skin, especially on these areas ear, elbow, lliac crest, hip (trochanter), knee, toe. Seek advice from a health professional.

• Change position regularly. This helps oxygen and nutrients in blood flow back into the cells of the skin, avoiding skin and tissue death.

• Avoid stretching or pulling on the skin, especially when moving from one place to another or when changing position. Avoid creases, folds and crumbs in the clothing and on the sitting or lying surface, as they can cause high pressure points.

• Spread the person’s weight evenly over the largest area possible. This will help to disperse the pressure. Use a suitable pressure reducing cushion, mattress or protector to help achieve this. Seek advice from a health professional.

• Keep the skin clean, dry and in good condition. Use breathable fabrics near the skin. Seek professional advice on managing incontinence where appropriate.

• Ensure adequate nutrition and fluid intake.

This will give the skin the best chance to be healthy.

Pressure Cushions, Mattresses and Protectors Pressure cushions, mattresses and protectors can assist in preventing the development of pressure areas and aid comfort. Pressure cushions alone will not remove the risk of developing pressure areas. They should be used in conjunction with other pressure management strategies, including regular position changes and good skin care. Careful consideration of many factors relating to the client and

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CONTINUED FROM PREVIOUS PAGE the environment is necessary when selecting the right equipment to manage pressure care. It is best to seek advice from a health professional such as an occupational therapist, physiotherapist or registered nurse to ensure that the correct equipment is obtained to meet the needs of an individual. Different materials are used for pressure cushions, mattresses and protectors. Some materials offer a high level of pressure reduction, whilst others provide less pressure reduction and may improve comfort only. Commonly used materials are as follows: Sheepskins There are both natural and synthetic sheepskins for use in beds and on chairs. They offer comfort, and can also be placed over rough surfaces to protect fragile skin. Sheepskin does not offer good pressure relief, so it is suitable for use with people at low risk of pressure areas only.

Foam There are a variety of natural and synthetic foams available of different densities and styles (e.g. flat, egg crate, pinhole, gridded). Foam is easy to cut to shape to suit the user. It requires little maintenance but has a short lifespan. It is useful as an aid in comfort. Foam is best suited to people at low to medium risk of pressure areas.

Fibre Natural or synthetic fibres can provide a cushioning effect in a mattress or a cushion.

They require regular laundering and “fluffingup” to maintain their degree of comfort.

They provide a stable base, but flatten quickly under the user. Fibre products are generally suitable for people at low to medium risk of pressure areas.

Water These types of cushions and mattresses are mostly used for comfort. They conform to the body’s shape as the water displaces. They require minimal maintenance, but even a small cushion can be heavy to move. They are unsuitable for use in sitting as they are very unstable due to the continual dispersion of water. Generally, water cushions are suitable for use by a person at low to medium risk of pressure areas.

Gel There are a number of types of gel and different ways for it to be contained in the cushion. Each will conform in different ways to the user’s shape. Gel can be useful to absorb vibration and is generally quite stable.

According to the type selected, a gel cushion can suit people at low, medium and occasionally high risk of pressure areas.

Fluid There is a range of new fluids, which are neither gel nor water and have many different pressure relieving properties. These fluids are usually used in combination with other materials within a cushion or mattress.

Depending on the type of cushion chosen, they can be suitable for people at low, medium or high risk of pressure areas.

Air/alternating air These may have one, a few, or many air chambers in a cushion or mattress, and are lightweight. They work on the principal that the user will be suspended or “floating” on the air cells. The lowest air pressure needed to lift the person clear of surface contact is usually the principle used for inflation. Daily checks for the correct inflation level is recommended. There is risk of a puncture, and many styles do not offer the stability some users require. The air in these mattresses can be static or alternating.

An alternating air mattress is connected to a motorised pump which constantly changes the pressure in the different chambers of the mattress. Depending on the type chosen, they are suitable for people at low, medium or high risk or pressure areas.

This mattress overlay uses air to reduce pressure

This air cushion and a combination air/gel cushion are just part of the range of pressure cushions which are used mostly on wheelchairs to provide pressure relief

Combination Some cushions and mattresses combine two or more materials to obtain the properties of each in the product. Common combinations include foam and fluid, foam and air, gel and air and gel and foam.

NEED TO KNOW MORE? Telephone, fax or e-mail your enquiry to LifeTech for further information from one of the therapists about products. ◗◗

An electric adjustable bed demonstrating how a hoist can be used for transfers

LifeTec is a not-for-profit, non-government Queensland organisation providing professional information and advice on assistive technology. LifeTec assists a wide range of people who wish to remain independent in their homes for as long as possible, as well as family members, children and adults who are living with a disability or supporting a person with a disability. Services include individual consultations, free community talks, displays and interactive workshops for health professionals. For more information contact 1300 885 886 (Queensland only), email mail@lifetec.org.au or visit www.lifetec.org.au

independent living centres in other states ACT SA VIC

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

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NSW TAS WA

Ph: 02 9890 0940 Website: www.ilcnsw.asn.au Tel: 03 6334 5899 Website: www. ilctas. asn. au Tel:08 93Bl 0600 Website: www.ilc.com.au

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BUILDING CONNECTIONS

Know thyself

Paul F. Gianni talks about his personality issues after a brain injury Feeling alone? The best antidote is building connections with others. Here is an overview of our Social & Recreational Options article from the first issue of Bridge.

Hobbies and social groups are great places to start.

TAFE colleges often run Adult Education Courses with a wide range of fun activities. Look into social clubs set up to cater for people with physical or cognitive disabilities, or look into sports groups ...

Sport and exercise groups can include , tai chi, yoga, cycling, bush walking, running, team sports, tennis or swimming.

Online support groups can be a great idea if you are in a remote area or have mobility issues. Be careful to protect your identity and personal details, and be aware of scammers and people deliberately targetting people with disabilities.

Brain injury support groups are usually very hard to find, because they usually need quite a few group facilitators to manage issues that arise. But call the Brain Injury Association in your State to see if they run any groups, or are aware of any in your area.

Basic social skills and behaviour can suffer after a brain injury, making it difficult to make new friendships and maintain old ones. Learn all you can about how a brain injury has affected you. Learn the best strategies for managing problems. Talk with your family members about this – they can help identify issues, and even work through them with you.

Volunteer work can provide a meaningful social outlet, especially if you can’t work any more.

Training and study are other possible options if you can’t return to work. An accurate assessment of your abilities may be useful, to make sure you can cope with the cognitive demands of study. Most educational institutions should have a Disabilities Officer who can provide you with support through your course.

If you would like to read the full version of this article, obtain a copy of Bridge Vol. 1 or download a PDF of this edition from www.synapse.org.au ◗◗

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Many people are different after the accident causing their brain injury than they were before. Most often this is fine. Anyway, it is fine for us but those around us do not know exactly how to handle the changes. Perhaps our tastes in food, dress, music or anything else may have changed. Maybe our modes of thought haven’t progressed beyond the time of our accident. During my coma, I regressed physically and mentally. I know for myself that it took thirteen years to finally catch up to the current date and my age. Now I can start my life in a group of peers without feeling out of place.

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Personalities Since my accident in 1991, I have occasionally had a problem managing my personalities.

During my life I have lived in many different places, all of which had an influence on my personal development. I have lived in many places throughout the country and around the globe. Since I also changed schools no less than a dozen times before starting high school, I have had to adapt to various living conditions.

All of the above information is to convey the message that while my physical being remained primarily stable, my personality fluctuations over time seemed necessary to me.

I felt different as I moved to different places, and occasional modifications were necessary in order for me to adapt and acclimate myself to new environments. Some of these changes included my style of dress, speech pattern, behaviour, intellect and athleticism. For example, while attending one school I can recall needing to emphasise my intelligence in order to avoid being ostracised, while at another I had to be stereotypically macho to avoid fighting with my peers. These are just two examples of how I altered my persona to fit in.

Triggers From time to time, I revert to an earlier style of conduct unconsciously; this happens when particular events evoke recollections of the past. Instantly I will mentally grasp a signal or memory that was similar to a previous experience. As a result I will then behave as I did under those circumstances, like a form of Pavlov’s conditioned response. Not all of those mannerisms are consistent with who I am (trying to be) today, leading to my behaviour being strange.

Recently For example, we were recently driving by a construction sight when somebody with a NASCAR sticker sped by us. Recalling the southern origins of auto racing, the times I spent living in the south and previously working on cars, I unknowingly began speaking with a southern accent. As a result, my wife asked.

“Why are you talking with a southern drawl?”

Then she said, “I don’t want to just see you as a brain injury survivor, I want to know who you were before your accident.” According to me, who I was really isn’t that important because that’s not who I am now. Further, who I am may not be congruent with who I want to be.

As survivors, we are all on a journey of rehabilitation – for the rest of our lives. Perhaps our tastes have changed along with our ways of doing things, which is fine. We are still living, breathing human beings with minds. “I think, therefore I am,” said Rene Descartes. As long as you keep thinking, you know you are still alive to be, so do and be whatever you wish. Keep thinking, keep being and good luck in whatever you wish to do and be. ◗◗ 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

Epilepsy

BRISBANE CARERS GROUP

Caring for someone living with an acquired brain injury, or know someone who does? Do you live in the greater Brisbane area? Then join our group!

For almost 10 years Synapse (formerly the Brain Injury Association of Queensland) has been supporting carers and their families by offering services in the areas of supported accommodation, lifestyle support, community response and training. We are dedicated to reconnecting the lives of those people affected by Acquired Brain Injury (ABI), including families and their support networks. The Brisbane Carers Group began as a result of the need to support carers and to help reconnect them with others. Caring for a loved one can be a full-time job and it helps to have support.

Synapse offers this free monthly get-together for anyone in a carer’s role.

The Brisbane Carer’s Group will provide each carer with the right support, information and an outlet for sharing.

Epilepsy is a chronic condition in which seizures are produced by temporary changes in the electrical function of the brain.

Seizures affect awareness, movement or sensation. Before a seizure some may get a feeling of unease called an aura. With medication, most patients with epilepsy who are otherwise healthy are able to live full and productive lives.

However, some patients’ lives are devastated by frequent, uncontrollable seizures or associated disabilities. Not everyone who has a seizure has epilepsy. Epilepsy is a long-term, ongoing chronic disorder that causes repeated seizures if it is not treated. It may contribute to, or even cause, brain injury but may also develop after a brain injury.

There are two major types of seizures.

The first type, a general seizure, begins on both sides of the brain. Full convulsions or brief staring episodes are often the result.

The second type, known as a partial seizure, originates in one region of the brain. In a simple partial seizure, the seizure related brain messages remain localised so that one experiences a feeling, sensation, movement, or other symptom without any change in the level of awareness. Some may suddenly become confused, fumble, wander or repeat inappropriate words or phrases.

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Treatment For most cases of epilepsy there is no cure, but anticonvulsant medications are the most common treatment. Used correctly they can be very effective in treating seizures.

Keep track of the frequency of your seizures and notify the doctor or nurse of medication side effects in case the medication needs

adjusting. Surgery may be used to remove damaged regions of the brain but is generally not performed unless drug treatment has failed.

If someone else has a seizure For a tonic-clonic seizure (grand mal, convulsion) you should get the person into a lying position and then onto one side. Place something soft under the head. Loosen tight clothing. Do not restrain the arms or legs. Do not put anything into the mouth. The seizure itself should only last a few minutes. Afterwards the person may be very sleepy and confused and should be talked to in a calm and quiet manner. If a person has a partial seizure, stay with them, talk calmly, and protect them from self-injury. Do not restrain them. They may be able to respond to simple commands such as “sit down”. After the seizure explain where you are and what has happened.

Living with epilepsy Having to cope with epilepsy as well as other problems from a brain injury is not easy.

But there are steps you can take to have some control over the situation: • Take your medication on time and avoid alcohol, coffee and other stimulants • Sleep well and minimise stress • Avoid conditions that trigger seizures • Wear a Medic-Alert bracelet • Get medical advice before driving.

Inform your family and friends openly about epilepsy. They will feel more comfortable around you and be able to assist if you have a seizure. ◗◗ This is an excerpt from our comprehensive publication, Acquired Brain Injury: The Facts. It is available for just the cost of postage within Australia, and can also be downloaded for free from www.synapse.org.au

HOW DOES IT WORK? The Brisbane Carers Group brings together carers under the guidance of a facilitator who is experienced in supporting carers. Our current facilitator is Kellie Sentinella who is a Synapse Community Response officer with several years experience in the disability sector and a Psychology background. Often other carers or workers are invited to present information and training.

WHY JOIN OUR GROUP? You can meet others in a similar position as you. Take a break while you receive information and support from others who understand your situation. You can: • share and express feelings, thoughts and concerns • listen to others without feeling obligated to participate • make new friends that have been, or are going though, similar experiences • gather additional knowledge on other services, programs or issues • enjoy a complimentary morning tea.

If you would like to join, or find out more information about this service, please contact Kellie Sentinella or Clare Humphries on 3137 7400.

You can also rsvp online at: www.synapse.org.au/brisbane-carers-group ◗◗

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Continence problems Types, causes, diagnosis and treatments

This article looks at the different types of incontinence, its causes, diagnosis and treatments, and how a person’s environment and physical health can be managed to minimise the problem.

Incontinence is the accidental or involuntary loss of control of either the bladder (urinary incontinence) or bowel (faecal incontinence).

It can be an embarrassing condition; it is certainly inconvenient, and it can be very hard to accept. Some people are so troubled by their incontinence that they cut themselves off from friends and become very isolated.

What people don’t know is that incontinence can often be managed so well that dramatic improvement is possible. In some cases, incontinence can even be cured.

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Urinary Incontinence Urinary incontinence affects about four million Australians of all ages, and is most common in older people. It may be caused by brain or nerve damage, by other physical changes (e.g. infections or prostate enlargement) or the environment may contribute (e.g. difficulty finding public toilets). There are several different types of urinary incontinence: • Stress incontinence • Urge incontinence • Overflow incontinence • Reflex incontinence • Functional (age and disability-related) incontinence.

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Stress incontinence is when small amounts of urine leak while coughing, sneezing, laughing, straining or lifting. It is usually related to changes in the pelvic floor muscles as a result of childbirth, being overweight, chronic constipation, chronic coughing, menopause or prostate surgery.

Urge incontinence occurs when a bladder contracts without warning and the person gets a sudden, strong urge to urinate. This may result in some loss of urine. People with urge incontinence visit the toilet very often. It is common in people with stroke, Parkinson’s disease and other conditions. Alcohol, caffeine, cold weather and anxiety make it worse.

Overflow incontinence occurs when the bladder does not empty properly and urine spills out without warning. The cause is usually something obstructing the flow of urine. It is common in men with an enlarged prostate but constipation can also contribute. Sometimes a neurological problem can make the person unable to feel a full bladder, causing overflow incontinence.

Reflex incontinence is when certain nerves in the spinal cord are damaged, the messages they send from the bladder to the brain are disrupted. When full, the bladder takes action and empties itself. Reflex incontinence is particularly distressing because it results in flooding, rather than leaking, without warning.

Functional incontinence occurs when older

people or people with a physical disability cannot always reach the toilet in time. They may have difficulty in moving fast or in undoing clothing. The problem may be complicated by dementia, poor vision, or a toilet that is difficult to reach in time.

Bowel Incontinence Bowel control problems are less common than bladder problems but still affect many people of all ages. Poor diet, not enough to drink, and lack of exercise are key contributors to bowel incontinence. A well balanced diet, good fluid intake, and regular exercise can help prevent it.

What Causes Incontinence?

There are many causes of urinary and faecal incontinence. It might be a neurological problem, a urinary tract infection, prostate problems, diabetes, constipation, or even a chronic cough, but most causes can be treated.

Medications are sometimes the culprit. For instance, some sedatives reduce a person’s awareness of body signals, while blood pressure pills can occasionally cause stress incontinence.

Other drugs may cause constipation, which can lead to bladder or bowel incontinence. Talk to your doctor about any problems you are experiencing.

In the case of bowel incontinence, severe constipation is often the problem. This causes the back passage to become stretched and weakened over time, and the person loses

control over it. Loose stools can also be difficult to control, especially if your pelvic floor muscles are weak or the sphincter muscle has been damaged. Loose stools may be caused by eating too much fibre, highly spiced foods or other food intolerance, some medications or bowel surgery.

Diagnosis Your doctor might order tests, such as a urinalysis to check for a urinary infection. A bladder ultrasound may be required to check if the bladder is emptying fully. Sometimes an X-ray may be required to detect severe constipation.

Treatment Treatments can range from losing weight and bladder retraining, to curing chronic constipation, physiotherapy and for a few, surgery. Where medication is contributing to incontinence, your doctor may be able to reduce the dose, spread the pills out over the day, or change the medication.

For urge incontinence, medicines are available to slow down the bladder, which doesn’t cure the problem, but it can improve things significantly. There may be side-effects however. Physiotherapists can help with stress and urge incontinence by providing simple exercises to strengthen the pelvic floor muscles that need to be done regularly.

Your doctor might need to refer you to a continence advisor – a nurse, physiotherapist or medical specialist working in continence management. Sometimes a referral to a urologist (a specialist in urinary problems), a urogynacologist (for bladder problems related to gynaecological issues) or a geriatrician (a specialist in aged-care) is appropriate.

Managing Incontinence – the Environment Incontinence often results when a toilet is not easy to find or use. An occupational therapist or an advisor from an Independent Living Centre can help you assess your environment for practical purposes, and set it up to help prevent accidents. Are any of the following issues in your home?

Getting to the toilet: Can the person readily walk the distance to the toilet? Is the lighting good enough? Are there mats to trip on? Would it help to leave a night light on? A label on the toilet door may remind someone with memory problems where it is.

Setting up the toilet: Do steps create access issues? Is the doorway and room big enough for a wheelchair or walking frame? Can the person balance at the toilet? Grip rails may help. If access can’t be improved, a urinal or commode chair may be the best solution. Is the toilet too low? Devices are available to raise the toilet seat. Can the person reach the toilet paper?

Does poor balance or restricted movement in

shoulders, elbows or hands make it difficult to use the toilet paper?

Clothing: Is clothing easy to get on and off?

Lots of layers can be a problem. Use stretch fabrics, elastic waist bands and velcro rather than zips or buttons. For easy laundering, buy non-iron clothes or consider using a linen service if constant washing of sheets is an issue.

Public facilities: When out, look for places with disabled toilets as these have space for a wheelchair and two people. Check with your local council or the National Public Toilet Map website at www.toiletmap.gov.au to locate toilets by town, suburb or postcode.

When memory is a problem: Establish a routine, and remind the person to use the toilet at regular intervals (every two or three hours) or at the times you know they usually go.

Managing Incontinence – Physical Health Diet, fluid intake and exercise are all key elements for managing incontinence well.

Diet: Constipation can make bladder problems worse and sometimes leads to faecal incontinence. A regular bowel pattern depends on a healthy, high-fibre diet, which means lots of fruits (fresh, stewed, dried), vegetables, wholegrain and wholemeal cereals and breads (oatmeal, rice, rye, wheat, barley) and nuts and lentils.

Fluid intake: We need about 1.5 to 2 litres of fluid a day – six to eight glasses. Fluid intake includes foods with high fluid content, such as jellies, soups and yoghurt. In the case of faecal incontinence, adequate fluid helps to soften constipated stools or thicken loose stools.

Often people with bladder problems try to drink less for fear of becoming wet, but this only makes matters worse. Firstly, it can cause constipation. Secondly, urine becomes concentrated, which can irritate the bladder, leading to infection. Thirdly, the bladder learns to hold less fluid, resulting in more frequent trips to the toilet. It’s important to drink enough, but sensible to refrain from lots of fluid before bedtime or social outings.

Exercise: Regular exercise is important because it improves blood flow throughout the body, including the gut, which helps to prevent constipation. If walking isn’t possible, arm, leg and body exercises will help. Weak pelvic floor muscles can contribute to bladder and bowel incontinence. Continence physiotherapists can assist with pelvic floor exercises.

Managing Incontinence – Aids and Appliances Absorbent pads and special pants are available that are designed to absorb urine or contain faeces. These come in a range of sizes and levels of absorbency. Some pads are disposable, some are reusable, and they are held in place by special pants.

For mild incontinence, some women can use thin continence pads or even panty liners.

Menstrual pads are not effective because they are not designed to hold urine, and they do not eliminate odour.

Urinary incontinence in men can be managed through condom drainage – a sheath over the penis, with a tube attached that leads to a leg bag or overnight bag. Some people use condom drainage as a back-up on outings, for example.

For men or women, urine can also be collected via a catheter – a tube inserted into the bladder. Long-term catheters need careful management however to minimise infections and other complications. A bag to collect the urine is strapped to the leg under the clothing.

A larger bag can hang on the bed at night. Ask your doctor about this method.

Other continence aids include absorbent bed sheets and chair covers (reusable or disposable), bed pans, commodes and non-spill urinals for use in bed or on car journeys.

Financial Assistance Most people must pay for their continence aids. Some assistance is available in some States and Territories through governmentfunded schemes. Some people on a disability pension may be eligible for the Continence Aids Assistance Scheme (CAAS). Ask your doctor, the National Continence Helpline (see Contacts below) or another health professional about this.

Contacts National Continence Helpline (NCHL) The Continence Foundation of Australia manages the NCHL on behalf of the Australian government. NCHL has trained continence nurse advisors who can provide you with advice, send written information, and direct you to local services (free call 1800 33 00 66).

Australian Physiotherapy Association Both the APA and the NCHL can help you contact a physiotherapist with relevant expertise, or visit the website www.physiotherapy.asn.au (go to Find a Physio, Your State, Continence) to locate one in your area (ring 03 9534 9400).

Independent Living Centres These centres are located across Australia.

Visit www.ilcaustralia.org to find your nearest centre.

Other sources of help include continence services and clinics, general practitioners, local community health centres or community nursing services. Your doctor can refer you to a nursing service. ◗◗ This is an excerpt from For Those Who Care: A Practical Guide published by BrainLink Services Ltd. This excellent resource is available for free download from their website.

BrainLink is a statewide service in Victoria dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families. Ring 1800 677 579 or visit www.brainlink.org.au

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It only takes

one punch

Two teenagers are shocked at how easily they could have devastated someone’s life

Youth Justice Conferencing is a response to youth offending that aims to educate offenders and reduce crime, and notably offences of violence against other young people that can cause a brain injury or other disability.

It brings together the young person, their family and the victim (if they wish to attend) as well as a police officer. The aim of the Youth Justice Conference is for the victim, the young person who commits the offence, and their family, to talk about the offence and come up with an agreement about how that young person can begin to repair the harm caused by the offence. Synapse staff members have become involved in recent conferences in Queensland.

We would like to share with you the stories of two teenagers who came to terms with the

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impact of violence. The events that follow started with one punch ...

Jerome’s story Recently an event took place involving an assault between me (Jerome) and (Ahmed)*.

This event took place in a suburban high school and was witnessed by many and effected a lot of people. The events that followed all started with one punch…

It was a normal school day in a suburban high school, the sun was shining, and Jerome was completing his daily routine of studying in class. When it came time for lunch the day took a horrendous turn for the worst. Jerome had heard some news involving his friend Sean and Ahmed. This news made Jerome very angry and he felt the need to relinquish his anger

out on Ahmed by confronting him. As Jerome attempted to confront Ahmed, Ahmed fled up the stairs where Jerome chased him. As both Jerome and Ahmed got to the top of the stairs Jerome shouldered Ahmed who then fell to the ground. Jerome then repeatedly punched him in the face.

A week suspension from school followed this incident. I thought that this was the end of it. Some three months later I was summoned to the local police station and questioned about the incident. I soon realised the impact of the incident was greater than I could have imagined. Over the three months I had time to think about my actions and regretted what I had done. But it wasn’t until I had the opportunity to listen to people from Synapse that it really hit

home. It was explained to me how one punch can change the life of not just the victim, but also the many people in the victims life – family, friends and work. The effects of that one punch – whether it is to the head or not – could be the cause of crippling a life.

You probably think that you are safe not aiming for the head, but think again. Let’s say that you didn’t aim for the head, and instead, like I did, shouldered Ahmed who then hit his head on something either on his way down or as he landed hard on a surface, or possibly even rolled back down the stairs, hitting his head repeatedly until he landed on the bottom.

I didn’t set out for this to happen, but that wouldn’t be the point. The point is that there are many possibilities that could come from one action, and we cannot control these possibilities.

What we can control is how we handle things in the beginning. I could have caused Ahmed severe brain damage, or even death.

I listened to the ladies from Synapse explain to me the difficulties some of the people the work with have. How this one punch can change a person’s life, their personality. I had never thought of this. I only ever thought that a physical incident would lead to a physical injury and when that injury recovered, things would go back to normal. I didn’t realise how a severe head injury of one person affected the lives of many. I feel that my independence is a really important part of who I am and something that I have tried to gain. I didn’t realise that this particular incident could take away from someone the very thing that I am searching for.

Through the aftermath of the event I have learnt a lot about the consequences of an assault and how I could have done things differently.

I was lucky that things turned out okay for Ahmed. But thinking of the consequences like getting in trouble with the law, is just a small part of it. Having to live with knowing that I was responsible for taking away someone’s life or causing the victim severe brain damage or worse, death would make it very hard for me to wake up everyday and be proud.

Taking someone’s life, causing them permanent disability… that’s not okay.

I have learnt to communicate with people if I have a problem with them instead of jumping to conclusions and acting out violently.

This event has changed my life dramatically and changed my views on many things. If I was to reverse time I would because I deeply regret what has transpired.

– Jerome *(names have been changed) michael’s story After having my youth conference and listening to what was said, how hitting or punching someone in the head can cause brain damage, I was so amazed. I didn’t realize how this could impact someone and the traumatic dramas that it could involve. Not only the victim but the entire family has to go through it.

I am so very saddened the way I treated my victim, knowing that I could have caused him and his family so much grief if anything serious had happened to him. Not only that, I wish to this day that I had never performed the action that I did.

I would not wish anyone to be violent against any person, as the result of assaulting a person can be very damaging and circumstances are not very good if you should hit a person in the head.

I listened to those who were present at the conference, the police officer and the lady who has a lot to do with brain injuries [Synapse Community Response Officer]. They explained to me that it’s not always the hitting (not that hitting is okay) but often what happens when the victim falls, and what they might hit whilst falling to the ground, which causes the damage of the head.

I am trying very hard to this day to be a better person, and to stop and think before reacting like I did that dreadful day that turned my life upside down. I know the grief I have put my family through, especially my mum – it’s not very good, and I do not want to travel down that path again.

Once again I do apologise to my victim and sincerely hope within him he can forgive me one day.

To all who attended my conference I thank you very much in educating me on how brain damage can be caused. ◗◗

how does youth justice conferencing work?

When a young person admits to an offence the police may make a conference referral instead of sending the matter to court. In some cases, a court will request that a youth justice conference takes place.

A conference convenor helps everyone talk through what happened and how everyone has been affected. The purpose of the conference is to: • Provide an opportunity in a safe environment to discuss what happened and to work out steps to put things right • hold the young person accountable for their actions • find ways to help repair the damage or harm that has been caused to the victim of the offence • involve the victim, the young person’s family and the young person themselves in making decisions.

Youth justice conferencing is now available in many parts of Australia.

Youth Justice Conferencing Program “This event has changed my life dramatically and changed my views on many things. If I could reverse time I would, because I deeply regret what has transpired”.

“I am so very saddened by the way I treated my victim, knowing that I could have caused him and his family so much grief if anything serious had happened to him. Not only that, I wish to this day that I had never performed the action that I did”.

These are just a few of the statements made by youths who have participated in the ‘Youth Justice Conferencing Program’.

Queensland’s Youth Justice Conferencing system was established statewide eight years ago in response to a need in the community. The Department of Communities took responsibility for this, and continues to facilitate the conferencing model. Synapse Community Response Officers began participating in conferences in October 2010.

The objective of conferencing is to hold young people accountable for their actions, and encourage them to take responsibility for what has occurred as a result.

The model also allows family members and victims to have their say, to seek answers to their questions, and to be involved in decisions about reparation. This is done as a meeting of people involved, facilitated by a trained youth justice convenor, in a non-judgemental non-biased environment. The conference process helps young people recognise previously unconsidered consequences of their actions, and gives them an opportunity to make positive changes to their lives.

Through the legal process, Magistrates or police refer young people to conferencing, provided the young person pleads guilty and agrees to go. Parents or Guardians are involved in discussions with police about the legal consequences of their child’s offending, and are encouraged to participate in the process.

Synapse Community Response Officers see their involvement in Youth Justice Conferencing as an invaluable opportunity to raise awareness about the causes, impact, and prevention of Acquired Brain Injuries to those at risk.

Youth Justice Conferencing participants have consistently reported high levels off satisfaction with the process, with more than 95% of participants surveyed, stating that they thought it fair and they were satisfied with the outcome.

For more information on youth justice conferencing go to www.communities.qld.gov.au/youth and click on youth justice. For more information on ABI contact Synapse at www.synapse.org.au ◗◗

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