019 - Bridge Magazine - Creating Connections - 2015

VOL-19

Creating Connections 1 / BRIDGE MAGAZINE

Closing the gap for Indigenous Australians Closing the gap is even tougher when a disability is involved

05

BRIDGE VOLUME 19 - June 2015 ISSN 1448-9856 General Editor:

Barry Morris

Contributing editors:

Jessica Irons

National Development Manager:

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

Young people in nursing homes Good news for some young Australians but a long way to go

11

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

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

Advertising rates are available on request.

Synapse is dedicated to improving the quality of life of people living with and affected

by Acquired Brain Injury, or people whose behaviour challenges our understanding.

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

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

1 / BRIDGE MAGAZINE

I’m on the road again Driving after a brain injury

21

INDEX

03 Practicing pride in the face of exclusion More talk than action with ‘inclusion’?

05 Closing the gap for Indigenous Australians

A disability complicates it even further

07 Information, linkages & capacity building More details about the NDIS 09 Are you ready to BANGONABEANIE?

Time to raise brain injury awareness

11 Young people in nursing homes

Di Winkler discusses this important issue

13 The disconnect

Maria’s struggle to parent after a stroke

14 Learning to listen again

A brain injury often means relearning this

15 Fight back

An inspiring personals story from Finland

17 A survivor’s perspective

Success & failure after a brain injury

19 The Guddi Project

Supporting homeless Indigenous Aussies

20 I’m so tired my brain hurts

Strategies for fighting this persistent issue

21 I’m on the road again

Driving after a brain injury

23 Steps to a healthier brain

Use it or lose it!

25 Anger, acceptance & action

Coping with events beyond our control

27 A hard act to swallow

When it’s difficult to chew and swallow

29 Anxiety & brain injury

How anxiety can lead to serious disorders

bridging THE GAP The disconnect There is significant concern for people with Brain Disorders, their families, carers, advocates and service providers, about the relatively low representation of this group in the National Disability Insurance Scheme (NDIS) at present. Concerns raised include issues with the assessment process, and inadequate understanding of the impact, comorbidity, and complexity of Neurological (Brain) Disorders for frontline staff. The concern is not only with regards to the provision of adequate services to this demographic, but also the cost of not delivering these services to people, and subsequent sustainability of the sector.

We often refer to Brain Disorders as the “Invisible Disability” because there can be no visible signs that someone has ongoing issues; but there is more to the reference.

Jennifer Cullen, CEO of Synapse

What happens when the system fails and an individual becomes disconnected?

Brain Disorders can lead to a range of social exclusion, most commonly homelessness and criminal justice (over 50% and over 65% respectively). Due to the complexity of functions the brain undertakes, and the localization of these functions, organic damage to the brain can cause a wide range of cognitive and physical effects. Difficulty with impulse control, memory, or even something as deceptively simple as planning and sequencing tasks (such as paying a bill or attending a court date), can have significant and ongoing implications to someone’s life.

Due to issues around out-patient planning and access to assessments or other services, many people will never have insight into the fact

they have a Brain Disorder, let alone doing something to address it. This creates a range of barriers to an individual being able to seek the support and resources they need.

Our Organisational values are underpinned by individual capacity building and community awareness and capacity building. The premise that, “no two Brain Disorders are the same”, is likely the most consistent message from organisations working in this sector. Synapse are specialists in Brain Disorders; we treat each person individually, no matter where they live or the culture they belong to, and we are committed to reconnecting the lives of those who are disconnected in the community.

Jennifer Cullen CEO of Synapse

Momentum is building. We are getting the word out as more people dedicated to improving the quality of life of those living with, or affected by a Brain Injury join together to raise the volume of our message by speaking with one voice.

Together we look to improve the support for every Australian currently living with a Brain Injury.

Together we will reconnect lives... right across Australia.

Connect with us at www.synapse.org.au 2 / BRIDGE MAGAZINE

Practicing pride in the face of exclusion

Despite relentless talk of ‘inclusion’, many people with disabilities repeatedly find ourselves all dressed up with nowhere to go - Stella Young Genuine inclusion of people with disabilities will never be achieved while we continue to ignore the most basic of access requirements.

In disability circles we hear a lot about inclusion. An organisation that employs people with disabilities among its staff is considered an ‘inclusive’ workplace. We refer to a school that has students with disabilities among the general student body as an ‘inclusive’ education setting.

Sporting programs, community groups, adult education classes - if there’s one of us disabled types there, it must be inclusive.

The jury is out on when the word first appeared in the disability vernacular, but I first became aware of it as a buzzword about ten years ago. And it has hung around. You know, like ‘shifting paradigm’, ‘change maker’ and ‘webinar’.

When inclusion first appeared on the scene, I wasn’t a fan. Talking about the inclusion of people with disabilities seemed somehow to

imply that our natural state was to be excluded, and that we needed to make a special effort to tolerate disabled people. I took exception to that.

As an aside, ‘tolerance’ is another word that really gives me the pip. It’s used to refer to accommodating race, religion, disability and even gender. It feels like asking people to endure the existence of people who are anything other than white, able-bodied and male.

In the years since I first became aware of ‘inclusion’, it still grates, but for different reasons. Perhaps, for me, it’s become less about the implication that disabled people are naturally excluded, and more about where and how the concept of inclusion actually applies in a meaningful way.

I had three experiences in the course of last week alone where I was unintentionally excluded due to a lack of wheelchair access.

Two were professional events - launch parties for projects that I had contributed work to -

RAMP UP - www.abc.net.au/rampup Ramp Up is a website which featured as an online destination for news, discussion, debate and humour for everyone in Australia’s disability communities. While Ramp Up is now discontinued, the website remains at www.abc.net.au/rampup/ as an important resource. Ramp Up was produced by the ABC with the assistance of the Department of Families, Housing, Community Services and Indigenous Affairs.

3 / BRIDGE MAGAZINE

and one was a joint birthday party for a couple of friends.

Late last year I missed out on attending the wedding of a close friend I’ve known for many years, because their venue was upstairs at a pub.

In a professional environment, I’m generally included. My access requirements are met in my workplaces (although this hasn’t always been the case and is not the case for a number of people I know). But when it comes time to celebrate, it’s often a different story. At one job, I arrived to our offsite Christmas party only to discover there was no wheelchair access to the venue.

Not for the first time, I went home and left my colleagues to celebrate.

I am political about disability. I’m relatively well read in disability theory. I have worked hard to become someone who doesn’t apologise for their existence, who doesn’t accommodate and validate prejudice. I have the words of the late Laura Hershey, ‘you get proud by practicing’, tattooed on my right inner forearm.

I am not someone who hates my impairment. I believe that for me personally, disability comes with as much privilege as it does disadvantage.

I like who I am, and I acknowledge that I have been unquantifiably shaped by my experience as a disabled woman.

When I discovered the social model of disability when I was 17, it allowed me to

A TRIBUTE TO STELLA YOUNG: COMEDIAN, JOURNALIST & DISABILITY ADVOCATE Stella Young was an Australian comedian, journalist and disability advocate. She was born with osteogenesis imperfecta and used a wheelchair for most of her life. Her public work as a disability advocate gained momentum when she hosted eight seasons of No Limits, a disability culture program on a community television station. Stella then served as the editor for the ABC’s online magazine, Ramp Up. She was a member of the boards of the Ministerial Advisory Council for the Department of Victorian Communities, Victorian Disability Advisory Council, the Youth Disability Advocacy Service and Women with Disabilities Victoria. She proudly described herself as a “crip”, despite objections by others.

“People get all up in arms when I describe myself as a crip because what they hear is the word ‘cripple’ and they hear a word you’re not allowed to say anymore,” she told 720 ABC Perth in 2012.

“Crip is a word that I find empowering the same way that some members of the gay community, but not all members of the gay community, find the word ‘queer’ empowering.”

Young campaigned against the idea that having a disability made her exceptional or brave.

“I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning” said Stella. “I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in Year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user.

Young died unexpectedly in Melbourne on 6 December 2014 and is sorely missed by all.

make a distinction between the limitations of my body and the failings of society. In a nutshell, the social model tells us that we are far more disabled by inaccessible environments and hostile attitudes than we are by our physicality.

My disability comes not from the fact that I’m unable to walk, but from the presence of the stairs. We are not wrong for the world we live in, the world we live in is not yet right for us, and we need to change it.

Of course, the limitations of the social model are vast. It doesn’t take into account that some of our restrictions and limitations do originate from our bodies. The environment is rarely the only issue, but sometimes it’s hard to separate the two.

In those moments when I have to turn down an invitation, whether to a swanky launch party or the birthday celebration of a friend, or when I go home alone after being confronted by a lack of access, I am filled with sadness and anger in equal measure. I’m also aware that in telling the truth about why I can’t attend, I’ve made other people uncomfortable. I have highlighted their thoughtlessness and so I also feel guilty.

The way I see it, I’ve been invited, therefore I’ve been ‘included’ from their perspective. But the onus is almost always on me to highlight the access barriers, and consequently decline the invitation. I am forced to lay my vulnerabilities bare. Intellectually, I know that this is someone else’s failing. While I know that the reason I can’t attend the party is because it’s up a flight of stairs, I’m simultaneously reminded that I cannot go to the party because I am unable to walk up those stairs.

Every single time I’m invited somewhere, I must ask, “Is there wheelchair access, including accessible toilets?” No one ever says, “Please

come to our event, we’d love you to join us and of course we have considered your access needs.”

Like many marginalised groups, the anger allowed to disabled people is rigorously policed by the dominant culture. This culture allows us to be angry about what it deems the problem which is, in more cases than not, impairment itself - but balks when that anger is turned outwards on a society that refuses to adapt itself to remove the actual barriers that disable us.

When we justifiably turn that anger on society, we are dismissed as ‘bitter’.

It’s a common story, whether your requirements are wheelchair access or something different. Apologising to a friend of mine who has a deaf partner that an event I was speaking at wasn’t going to be Auslan interpreted, she laughed and said, “Oh, we would never assume there’d be an interpreter, don’t worry.” That, to me, is a worry. A pretty big one. And yet, where’s the outrage?

Many people are eager - and justifiably so to point out the failings of institutions when it comes to issues like race, gender or sexuality, but remain silent on disability. The NSW Library recently made the egregious error of planning a panel on multiculturalism and invited only Anglo speakers. The public response was swift and damning, as it should have been.

But the persistent exclusion of disabled people does not attract this kind of response.

There is no loud protest against the thoughtless exclusion of disabled people with access issues.

We either ignore it altogether or relegate it to the too hard basket. Why? The only difference I can see is one of intent, and as the common refrain now goes, intent is not an excuse.

When this kind of exclusion happens in

professional settings, the message is clear: we are happy to have you work with us. We will include you in our program or event or comedy line-up. But that’s as far as we’ll go. We’ve let you in, we’ve ticked that box and we will boast about it in our annual report. We will pat ourselves on the back for being inclusive and tolerant. And then we’ll celebrate without you.

When it happens in social settings, it stings in a different way.

I often wonder whether I would rather just not be invited in the first place, than be put in a position, over and over again, where I have to decline invitations from people who haven’t thought it through. It’s awful to be excluded, but it’s almost worse to have to tell people who (at least most of the time) mean well, that their thoughtlessness has excluded you.

It is on days like these I remember why I have the words of Laura Hershey tattooed on my arm. Because it takes a lot of work to be proud of who you are in the face of persistent exclusion.

Unfortunately, ‘inclusion’ has become another one of those concepts we pay lip-service to, while kidding ourselves we’re making an effort. Until we start practicing what we preach, ‘inclusion’ is just another word.

Ramp Up is a website which was produced by the ABC and featured as an online destination for news, discussion, debate and humour for everyone in Australia’s disability communities. While discontinued, the website remains at www.abc.net.au/rampup/ as an important resource.

4 / BRIDGE MAGAZINE

Why rehab is so important Recent research indicates that the adult brain can show experience-dependent recovery of neural circuits. This finding has three important implications, as follows: • A lack of use and stimulation of the brain, such as the absence of rehabilitation opportunities or inactivity, may prevent experience-dependent recovery.

• If people reduce their activity and participation in their world because of the effects of brain injury, they may develop secondary or additional social, cognitive and behavioural disabilities.

• Depression and other emotional disorders, such as anxiety and post-traumatic stress, can lead to poor motivation and may lower a person’s use of helpful coping strategies.

There are five common forms of recovery and adjustment following a brain injury. To explain these forms of recovery and adjustment, the following sections use speech impairment as the example.

Remediation Remediation involves relearning how to perform tasks and skills in a similar way to pre-injury performance, e.g. investing time and effort to practice speech therapy exercises in order to relearn and master language skills.

Substitution or compensation This form of recovery involves using previously acquired skills or learning new skills to perform tasks in a different way, e.g. learning alternative means of communication such as writing messages, using a communication board, sign language or maximising non-verbal communication skills.

Accommodation Accommodation involves the adjustment of personal goals, expectations and priorities to reflect the changed level of abilities, e.g. accepting that the speech deficit is a long-term effect of the injury and adjusting self-expectations about speech abilities.

Assimilation Assimilation involves modifying the environment or adjusting the expectations of other people, e.g. selecting supportive environments or tasks that match the person’s level of communication skills or educating other people to use alternative means of communicating with the injured person.

Decompensation Decompensation is often more problematic than it is beneficial. It involves reducing the need to use a skill, e.g. avoiding or withdrawing from social interaction to reduce the need to communicate.

5 / BRIDGE MAGAZINE

Closing the gap for Indigenous Australians with disabilities Alongside high rates of incarceration, unemployment, homelessness and some of the poorest health outcomes in Australia, Indigenous people’s access and use of disability services is under-representative of the total Aboriginal population. Government data shows twice the rates of core activity limitation as non-Aboriginal people.

The high prevalence of disability in the Aboriginal population results from poor social health status and disadvantage that are a legacy of European colonisation and dispossession.

Many Aboriginal communities experience inter-generational depression and trauma as a direct consequence of cultural dispossession, racism and social segregation.

Government data shows Aboriginal people are twice as likely to have a core activity limitation as non-Aboriginal people. And they’re more likely to be caring for a person with a disability than non-Aboriginal people.

Earlier this year, the Productivity Commission reported the need for a targeted approach to improve the participation of Aboriginal people in government-funded disability supports and services. As a result, the government is undertaking a number of pilot programs in response to the recommendations of the Commission’s report on the Disability Care and Support Scheme.

Current limitations Disability service providers adopt two

common strategies that fail to establish a culturally responsive service system for Aboriginal people.

Firstly, they invest in staff training programs in Aboriginal cultural awareness. This appears to be a positive step, showing that disability service providers acknowledge cultural differences between Aboriginal communities and mainstream community services.

Such programs aim to educate non-Aboriginal workers on Aboriginal cultures, politics and history. But cultural awareness training doesn’t work if the disability service provider is not committed to networking and engaging with local Aboriginal communities on a regular basis.

Research undertaken by the National Disability Services Association found that some non-Aboriginal workers get caught up in a permanent state of self-consciousness when interacting with Aboriginal people. As a result, non-Aboriginal workers are disinclined to work with Indigenous families as they fear they may offend them.

Second, some disability service providers have undertaken Aboriginal recruitment initiatives to establish a culturally safe environment for Aboriginal people. Research indicates that many prefer to work with an Aboriginal person than a non-Aboriginal person.

So management committees and staff wrongly assume that placing responsibility for all “Aboriginal matters” and Aboriginal

Managing anger

Depending on which parts of the brain have been injured, some people will struggle with getting angry very easily, then attempting to control it.

First, identify why you would like to manage anger more successfully. Then identify what benefits you expect in everyday living.

clients onto the Aboriginal workers is culturally respectful. Putting this into practice means non-Aboriginal workers don’t have to engage in Aboriginal communities. And its result is that the non-Aboriginal workforce doesn’t learn about local Aboriginal community cultural protocols and practices.

Meanwhile Aboriginal workers develop high workloads and are limited in their career development. The end result is that Aboriginal workers become dissatisfied with their workplace and resign.

These two strategies inevitably fail when used in isolation because there’s limited emphasis on relationship building between disability stakeholders and Aboriginal communities.

The focus on cultural and language differences between Aboriginal and nonAboriginal communities emphasises such differences and disregards the diversity of cultures and experiences, perpetuating the myth of Aboriginal homogeneity.

Better approaches Disability stakeholders and Aboriginal communities need to interact at the cultural interface to improve the level of engagement between Aboriginal communities and disability service providers.

The cultural interface is the realm where the trajectories of cultures, histories, beliefs and experiences of both Aboriginal people and nonAboriginal people intersect, creating tensions

and challenges for both cultural groups.

We need to resolve this contestation and tensions to overcome barriers to participation and access for Aboriginal people in the disability service system. The key to this is having Aboriginal communities and disability stakeholders improve communication and relationships under the reforms to the aged care and disability services sector.

One such strategy is creating community interagency forums. This would require stakeholders and Aboriginal communities to establish local networks to identify and address service and program priority areas.

Many disability service providers and Aboriginal communities in New South Wales have developed such networks, which have improved relationships and opened dialogue between the two groups. These networks have undertaken disability awareness campaigns, hosted Aboriginal carer workshops and Aboriginal cultural awareness programs.

The initiatives have helped establish a shared understanding of disability and the benefits in accessing disability services for Aboriginal communities.

Author John Gilroy is a lecturer/researcher in Indigenous Health at the University of Sydney. This article was originally published under the Creative Commons Licence at www.theconversation.com

Become more aware of your personal thoughts, behaviours and physical states when feeling angry. This awareness is important for identifying what triggers your anger. Keep a diary or chart of all the situations that trigger anger. List the situation, the level of anger on a scale of one to ten and the coping strategies that help to overcome or reduce feelings of anger.

A simple and effective technique for reducing levels of anger is the Stop – Think technique: 1 Stop! and think before reacting to the situation (are these thoughts accurate/ helpful?)

2 Challenge the inaccurate or unhelpful thoughts 3 Create a new thought Here is an example of someone wanting to improve their ability to cope with anger when waiting in long queues.

Typical angry thoughts: ‘The service here is so slack. Why can’t they hurry it up? I’m going to lose my cool any moment now’. Stop thinking this!

Is it helpful thinking this way? What is the final outcome if I keep thinking this way?

New calmer and helpful thoughts: ‘Everyone is probably frustrated by the long line – even the person serving us. I could come back another time, or, I can wait here and think about pleasant things such as going to see a movie’.

6 / BRIDGE MAGAZINE

Information, Linkages, and Capacity Building We strive to reconnect the lives of those most at risk within our community, those affected by a Brain Disorder People with disability engage both directly and indirectly with a range of informal and formal supports and resources over their lifetime, to assist them with their everyday needs and their social and economic participation. Their engagement is influenced by a range of societal, environmental, 7 / BRIDGE MAGAZINE

demographic and disability-specific factors such as: age; location; socioeconomic and cultural background; type and severity of disability; cyclical or episodic nature of disability; and capacity of the community to accommodate diversity and reduce the impact of disability.

A social insurance model invests in formal,

disability-specific support to reduce the lifetime cost of disability, at both the population level and individual level. Investment in community education, broad-based interventions and capacity building sustains and strengthens informal support and promotes the social and economic inclusion of people with disability. A

WHAT IS THE RATIONALE BEHIND THE NDIS? The Productivity Commission submitted a report to the government in relation to disability support in Australia, stating that the current system is “underfunded, unfair, fragmented and inefficient.” It proposed an entirely new model with two separate schemes.

Living positively

One of those schemes will be the National Disability Insurance Scheme (NDIS), which will provide support to 360,000 people whose disability has a significant impact on their daily life.

The NDIS is a new way of providing individualised support for eligible people with permanent and significant disability, their families and carers. It aims to provide a flexible, whole-of-life approach to the support needed.

The NDIS will provide: • information and referrals • links to services and activities • individualised plans • where necessary, supports over a lifetime.

We raise community awareness and encourage greater inclusion and access to mainstream services, community activities and other government initiatives.

We support service providers to build capacity and be part of the scheme.

Over time, we will find new and better ways of providing support, by building on what works well and learning from the lived experience of people with disability.

A system that responds only to an individual’s need is not enough to ensure societal change.

Information, Linkages and Capacity Building (ILC) will allow the NDIS to influence and shape the delivery of supports at a systemic level to provide better outcomes for people with disability, their families and carers. Over time, this can reduce the demand for, and level of support required through individually funded responses (and thereby reduces longterm scheme costs). ILC enables the NDIS to fund supports not directly tied to an individual and, by doing so, gives the scheme the ability to deliver its operational and strategic objectives including, but not limited to: 1.

Information, Linkages and Referrals Telephone information, referrals, websites, fact sheets and support planning.

2.

Capacity building for mainstream services - Building the capacity of mainstream services and enhancing inclusiveness of people with a disability 3.

Community awareness and capacity building - Public awareness campaigns, basic training, community activities and networks.

4. Individual capacity building Professional development, capacity building, and peer support groups.

5. Local area coordination (LAC) - Prevention, brokerage, and facilitating information support systems.

current services across to the ILC. While there

If these objectives seem familiar, they are.

Information, Learning and Capacity Building is basically a strategic re-purposing of the Home and Community Care (or relevant state-wide) funding. Formerly called “NDIS Tier 2”, ILC is designed to complement more direct services such as supported accommodation, community access, and complex care (aka “NDIS Tier 3”).

Synapse is currently working to remap our

Protected Special Category Visa.

will be some changes in terms of the way we are funded and the outcomes being delivered, our model for business development is focused on strategic partnering with more NGOs, and connecting with more participants and their families across Australia.

Accessing the NDIS It’s vitally important that if you think you may be eligible for the NDIS that you register as soon as possible.

If the scheme hasn’t

yet launched in your area, there should be a transition program in place, such as “Your Life, Your Choice” in QLD, or “My Way” in WA. To access the NDIS, you need to meet the following requirements: • Have a permanent disability (physical, cognitive, sensory, intellectual, neurological, psychosocial), • The disability has significant impact on everyday life and on the person’s ability to participate in the community, • The person will need ongoing support, • Be aged less than 65 when you first access the scheme, • Be an Australian citizen, a permanent resident or a New Zealand citizen who holds a

If you are unsure or need assistance in this process, seek support from an organisation like Synapse to help you navigate the system, or visit the scheme website at: http://www.ndis.gov.au/ (Portions of this article has been sourced from

There are common elements about getting through traumatic situations in an emotionally and physically healthy manner. What are some of the forces at work that help people cope with a brain injury?

We all know the common expression “see your glass as half full, not half empty”. In any traumatic event, some will groan and feel it just confirms for them that the world is an unjust place full of misery. Others will smile and say ‘what doesn’t kill you can only make you stronger’. It is the latter group who make the best recoveries after a brain injury. They see negative situations as a time to grow and develop. They also tend to be more selfless and concerned about others.

Is laughter the best medicine? There is certainly nothing funny about brain injury, but finding reasons to smile each day is a factor in health and raises the level of optimism. Our attitudes and beliefs have a strong influence on the body’s ability to heal itself.

Make the most of your rehabilitation. The good news is there is no limit to the extent of your rehab. How far you get depends on how much you put in, and even if improvement is painfully slow, remember progress is better than staying where you are. Set and prioritise goals, implement plans and make the most of support networks to stay motivated.

Many individuals and their families say that faith helps them through the recovery process. Some families with no religious affiliation find themselves praying, possibly for the first time, but for others it may simply be contemplating the deeper aspect of existence and deriving some sense of purpose in having experienced a brain injury. In fact, many take comfort in the thought that the brain injury has occurred for a reason and then make the most of learning from the experience.

In the end it comes down to whatever works for you. Choose to not give in to negativity, and find the strategies that will help you do this. As Ronald E. Osborn said, “Undertake something that is difficult; it will do you good. Unless you try to do something beyond what you have already mastered – you never grow.”

the National Disability Insurance Agency.).

8 / BRIDGE MAGAZINE

Are you ready to BANGONABEANIE? The BANGONABEANIE Campaign asks people to proudly wear a beanie and make a donation to support National Brain Injury Awareness Week (17-23 August 2015).

The campaign supports one of the largest and most disadvantaged disability groups in Australia, and that’s not counting their family, friends and support networks.

Now in its fifth year, BANGONABEANIE has grown to include more organisations, exposure in different countries across the world, and most importantly, more families reconnected.

This campaign is critical because community awareness of Brain Injury is poor, there are many more people living with Brain Injury than is currently being reported, and more services are needed to meet the demand.

The long-term success of raising awareness of Brain Injury will be in outcomes such as: • A reduction in the incidence of Brain Injury • Improved medical treatment, rehabilitation and support services • More support for family members and carers • Flexible work or study conditions for those who return to employment or education • Reduced rates of homelessness and imprisonment for people with Brain Injury • Reduction in crime and substance abuse through early and appropriate support.

9 / BRIDGE MAGAZINE

How can you get involved?

Whether you want to get involved with BANGONABEANIE as an individual, or would prefer to include your workplace, school, or community, there are plenty of ways you can take action and make a meaningful difference in the life of someone living with a Brain Injury.

Aside from buying a blue branded beanie or other merchandise from our web store, one of the most impactful actions you can take is to host an event. This could be anything from a small workplace morning tea, all the way through to a large-scale gala dinner.

Why not BangOnABarbie?

Simply invite some mates around for a BBQ, collect some donations, and start a conversation that counts.

An easy way to help us spread the Brain Injury Awareness message even further is to use social media. Follow us on Facebook (BANGONABEANIE.com.au) and Twitter (@ bangonabeanie) and don’t forget to share your photos with us by using #BANGONABEANIE. If you would like to help us fundraise, you can set up a supporter page via the Everyday Hero website. This allows you to share your story, upload photos, and collect donations by using social media to share your page amongst your networks.

Getting the attention of the media is a fantastic way to help raise awareness. We will

be posting a number of media releases to the BANGONABEANIE website and social media which you can then forward to your local media outlet. Why not share your own story? Local media outlets are always looking for personal stories to publish. By doing so, you will be helping the Brain Injury Awareness message reach an even wider audience.

Take a selfie pic!

This year we will again be running the SelfieLess Wall initiative, whereby you have the option of purchasing a beanie for a homeless person. In recognition of your good deed we will post your selfie to our Selfie-Less Wall on the website.

In

2014,

with

your

help,

the

BANGONABEANIE campaign raised over $50,000, and in 2015 we are hoping to raise even more! This year, all money raised will go towards providing support and assistance to individuals and their families in crisis.

Are you ready to help us transform this “Invisible Disability” into a very visible one?

Visit http://bangonabeanie.com today!

P L E H O T T H G I F E H JOIN T N I A R B A H T I W S E I 1 i n 1 2 AU S S !

E F I L R E T T E B INJURY LEAD A Without organisations like ours, everyday mothers, fathers, brothers and sisters would be left without the support they so desperately need when trying to reconnect their lives after a brain injury.

Buying just one BEANIE will help us improve the level of support to families. In turn you will also be showing the 1.6 million Australians with a Brain Injury that they are not alone. The more Beanies we sell, the louder and stronger ourmessage becomes and the more support we can offer

BANGONABEANIE supports one of the largest and most disadvantaged disability groups in Australia, and works to transform an ‘Invisible Disability’ into a very visible one.

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

Like to get involved?

No Super powers required, just jump online and buy a beanie or to make a donation!

10 / B R I D G E M A G A Z I N E

Young people in nursing homes

Di Winkler explores the challenges for those who have lost almost all meaningful connections in life In December 2014, a Senate Inquiry into residential care options for young people with disability was announced, and has given a voice to some of the most disadvantaged and vulnerable people in our society.

It has been 10 years since the initial Senate Inquiry about young people in nursing homes.

The current Senate Inquiry will focus on the adequacy of residential care for young people with disability, including young people in nursing homes.

In 2005, as part of the Inquiry into Aged Care, Senators were stunned to meet people like 34-year-old Vicky Smith. Vicky sustained a severe brain injury in a horrific car accident and was admitted to a nursing home at the age of 17. Vicky told the committee, “I have been in a nursing home for a long time, and I have seen death after death. I do not have the willpower to put up with any more deaths.”

YPIRAC - a light at the end of the tunnel In 2006, Governments jointly established and funded the national five-year $244 million Younger People in Residential Aged Care (YPIRAC) program. The program was

implemented through disability services departments within each state and territory government. As a result of this program, 250 young people were able to move out of nursing homes and a further 244 young people avoided being admitted. Throughout Australia, 65 new services were created to provide housing and support for over 322 people. Summer Foundation research found that moving out of nursing homes enriched the lives of young people with disability. They went outside more often, had more opportunities to make everyday choices and spent fewer hours in bed. After 23 long years in a nursing home Vicky now lives in a community house with several other young people with disabilities.

The need for action beyond YPIRAC One of the key findings from the YPIRAC initiative is the importance of preventing new admissions to aged care facilities. It is a much better use of resources to stop people from entering, than letting them enter and then trying to move them out. Once in a nursing home, young people lose skills and their social networks diminish. Most (59%) young people

are admitted to an acute or rehabilitation hospital before their first admission to residential aged care (RAC). This suggests that disability services need to partner with health services to develop pathways from hospitals to community living in order to prevent new admissions. The YPIRAC initiative made a significant difference to the lives of the people who received services but it did not create the systemic change needed to stem the flow of young people into nursing homes. Since the YPIRAC initiative ended, the system has largely reverted to the way things were in the past. The new housing and support options developed for this target group are full and vacancies are usually only created when a resident dies. Over 300 people under 50 are still admitted to nursing homes each year in Australia.

NDIS is part of the solution The disability sector is currently being transformed with the introduction of the National Disability Insurance Scheme (NDIS).

People under 65 years of age living in RAC are eligible for funding through the NDIS. The National Disability Insurance Scheme (NDIS)

“I have been in a nursing home for a long time, and I have seen death after death. I do not have the willpower to put up with any more deaths.” - Vicky Smith 11 / B R I D G E M A G A Z I N E

“HOW COULD THE SYSTEM GIVE UP ON A 19-YEAR-OLD?” The Summer Foundation supported 50 people with disability and families to write submissions through workshops held in Bendigo, Melbourne, Sydney and Geelong in January.

At the Senate Inquiry hearings, it was clear that the Senators were engaged and moved by the statements of young people in nursing homes, and their families. Families described the trauma of finding that hospitals planned to discharge their young person to a nursing home because there was no where else for them. Ann Newland, mother of Michelle told the inquiry “I was absolutely shocked that the nursing home was our only option, how could the system give up on a 19 year old?”

Interface of aged care & disability

The Senate Inquiry has given a voice to a group of people who are the most disadvantaged and vulnerable people in our society. The Senate heard about the first hand experience of Sam and Daniel, both young people who are currently living in nursing homes. Sam is 30 years old and has lived in a nursing home for over a year. Sam told the committee, “I want to live with other people my age”. Daniel aged 51 told the committee, “Thank you for the opportunity to let our voices be heard, everybody has different experiences, every individual needs to be listened to”. In his submission to the inquiry, Daniel wrote, “I have made a lot of friends here but they pass away too quickly, so I have made a resolution not to get attached to people because it’s too hard.”

is part of the solution; it will provide funding for the support that people need to live in the community. However, there are three key issues that need to be addressed: • Ensure young people in nursing homes get access to the NDIS • Prevent new admissions of young people • Increase the number and range of housing and support options.

Ensuring access to the NDIS Based on current research and experience with previous government programs, most young people in nursing homes will miss out on the NDIS. They are unable to initiate and complete the registration process due to their cognitive and communication difficulties.

They often have no one to advocate on their behalf. However, we are confident that with the momentum generated by the Senate Inquiry, some practical solutions can be developed to streamline the NDIS registration and planning process for young people in nursing homes.

Getting these processes right in the NDIS trial site is critical prior to the national roll out of the NDIS. Preventing new admissions to aged care Once young people move in to nursing homes it is hard to get them out – they lose skills and their social connections. It is critical that the NDIS collaborate with Health to prevent new admissions of young people to aged care. We need transitional and slow stream rehabilitation services that give people the time they need to demonstrate their potential before they are forced into nursing homes. While there are pockets of excellent transitional and slow stream rehabilitation services throughout Australia, we need a national network of these services.

More housing & support options The most difficult but essential part of the solution is the need for more housing and support options for young people in nursing homes. Very few young people will move

out of aged care facilities as a result of the NDIS because people need somewhere to live.

The disability supports, equipment and home modifications provided by the NDIS are not enough. The NDIS has limited funding for capital to support the development of new housing for young people in nursing homes.

A range of housing options including options for people to live with their partner and/ or children is needed. Many young people (46%) in RAC are in partner relationships and 27% are parents of school age children.

Australia desperately needs more housing that is both accessible and affordable. Housing for people with disability needs to be incorporated into mainstream housing strategy instead of continuing to build segregated and specialist housing – this will create the scale and range of housing options we need.

A call to action Young people should not be forced to live in nursing homes because there is nowhere else for them. We are hoping that as a result of the Senate Inquiry, the federal government will provide strong leadership to ensure that young people in nursing homes do not continue to fall through the gaps. Young people in nursing homes need a more coordinated cross sector approach that involves health, housing and aged care rather than just looking to the NDIS to solve the issue alone. We look forward to seeing the report with recommendations by the Senate Committee in late June.

Di Winkler is CEO of the Summer Foundation, which is committed to resolving the issue of young people living in nursing homes by supporting, informing and empowering people with disability and their families. Visit the website at www.summerfoundation.org.au for more information.

A large group of people with a disability get their support through the aged care system. Usually those in the aged care system acquire a disability because of natural ageing, but the system also supports many older people who acquired a disability prior to the Age Pension age.

Drawing boundaries between the aged care and disability systems isn’t easy – there are significant similarities and differences. Similarities include goals such as preserving dignity, maintaining mobility, meeting care needs and providing appropriate rehab.

However, people may be best served by different overarching arrangements. For example, the rights-based philosophy that is so prominent in the disability system is much less evident in the aged care sector at this time.

There should be no artificial barriers to people accessing eligible services, even if those services are notionally identified as primarily serving the demands of the aged care or disability system. Rather, the critical concern is to ensure that people would be able to use the support system that best met their needs, regardless of the funding source.

How would the NDIS affect things? If a person elected to stay with the NDIS care arrangements, their previous support arrangements would continue, including any arrangements with disability support organisations, their group accommodation, their local area coordinator, or their use of self-directed funding. The NDIS assessment tool would be used to determine their entitlements.

If a person over the pension age required long-term residential aged care then they would move into the aged care system to receive that support, regardless of the age at which they acquired their disability.

The advantage of these flexible arrangements is that the NDIS would, from the perspective of any person, become a lifetime scheme if that was preferred.

To read more, visit http://www.pc.gov.au/inquiries/ completed/disability-support/report/27-disability-supportappendixc.pdf

12 / B R I D G E M A G A Z I N E

The disconnect

Martia Martinez on the struggle to rebuild connections with her children and the wider community after a stroke I thought I was having one of those nightmares where you think you can’t move, but then I thought, surely I’ll wake up soon. Then I saw my mother standing at my bedside, and that’s when I thought to myself “Wait a minute, this is not happening since last thing I remember, mum was in Spain, and I was in Australia.” Then I tried to speak, and nothing would come out. It suddenly hit me, this was not a nightmare, and I was already awake.

That is what you call a rude awakening! Yes it was true, I was in hospital, and they had just saved my life after a very severe stroke. What I learnt later, and this is something that my husband doesn’t like to talk about, is that the doctors approached him to donate my organs, and that thanks to him I’m still alive.

Why did this happen?

Phew, I survived that one! Barely, just barely.

What ensued then, was a series of soul searching questions – why me? I was a very active mother of three, then in a flash, I lost my independence.

I still don’t know why but I have now stopped asking myself that question. It is what it is, and that’s that. It has taken me a long time to arrive at this conclusion, but I have learnt to let the question go for the sake of my family.

A life changing event for everyone The children have had to adapt to having a mum who can’t walk, or talk normally. Some days, they were angry. Sometimes when I picked them up from kindergarten they would ignore me. There were many times when I would stand in front of Childcare discussing with my carers the best way to get the children to say hello to mum. Yes, it has been tough for all of us, specially my husband who is still in shock.

Also my family in Spain are still coming to 13 / B R I D G E M A G A Z I N E

terms with what has happened. For example, we all went to Spain to spend Christmas last year with my family. All my childhood girlfriends organised a get together party. For the first time, I was taking the children on an outing without my husband. Well, I was afraid that the children would get bored, and ask for daddy. To my great surprise, the children had a great time, and they didn’t want to run home to dad. It has taken the children a long time to accept their mum, and I still don’t know if they have got used to having a special mum.

A long journey to acceptance Acceptance is the one thing I have to work on. I still have not accepted what happened to me four years ago. However, keeping the family together is one of the most important things in my life. I have three beautiful children, and it gives me great pleasure to see them grow and develop. I should also mention, I have a very supportive husband who shows every day how patience goes a long way. It is for this reason that I have learnt to accept the misunderstanding of others.

I’d like to share something funny that happened to me on my way to Spain. I have a travel companion called Angel as I have to always travel with support. The reason why I’ve chosen this name for her is because she has to endure the long trip to Spain with me.

Angel has to help me to eat, she has to prepare the lovely thickened water I have to drink… not to mention taking me to the loo in such a confined space. That’s why she deserves the name.

During the trip, something very scary happened. We had a stopover in Dubai at the big airport in the middle of the desert. Almost everybody uses wheelchairs to go from A to B.

Angel and I became separated. That’s when a very unfriendly officer dressed in a burka asked me to go inside her booth. Once inside, she asked me to stand. I answered as politely as I could that if she could hold me, I could try.

She didn’t understand me and ordered me out of the chair. At this point, I got very scared and started screaming for my friend Angel. When the officer understood, that the wheelchair was not a fashion statement, she apologised and let me go.

Don’t ignore me!

There are many instances like these where people don’t know how to address someone like me. Sometimes they shout, sometimes they speak in slow motion and sometimes they talk about me as if I wasn’t there. An example of this is what happened to me once I arrived in Spain. After a very long trip, we finally arrived in Madrid airport, and because I travel in a wheelchair, the airline provides additional support. When the support lady arrived to help us, she started asking questions to my friend about me. Does this lady stand, does this lady walk, and so on. The questionnaire, added to the very long trip, got me a bit hot under the collar and I decided to respond to the young lady, thinking she wouldn’t understand.

“This lady talks,” I offered. To my great surprise she understood me just fine. From that moment on, she addressed me directly. No more questions to my friend about me as if I was invisible.

Overall, I try to make light of these situations.

Like my psychologist says, I shouldn’t take life so seriously. I know I’ve been given a second lease on life, and that’s what’s important. The rest is not important.

Learning to listen again When somebody really listens to you, you feel understood, appreciated, interesting and worthwhile - so listening skills are crucial to making, and keeping, friendships

While smiling babies are very cute, in reality they are completely self-absorbed and will face a long journey toward hopefully taking an interest in other people, and balancing their own needs with those of others around them.

A brain injury can disrupt much of this hardwon experience, and we can revert to our earlier basic patterns. The result? People will think we are self-centred and desert us in droves! If you have lost some of your listening skills then a critical step to maintaining your relationships is learning to listen again.

Typical issues after a brain injury You may now have trouble organising your thoughts into compact, structured sentences so you may tend to rave on and on. You may have lost the ability to pick up non-verbal cues from other people, such as boredom if you are talking too much, or frustration if you keep interrupting them. When social skills have been disrupted, you will need to begin the slow process of relearning these skills.

Ask questions People love to feel you are taking an interest in

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

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

Look out for cues Much of our communication is non-verbal. You know the person is probably not enjoying the conversation when they don’t keep eye contact, turn away from you, look at their watch, or stop smiling. These may be an indication you have talked too long, or on a topic they don’t find interesting. Of course, they might just be depressed themselves, or need to be somewhere else! Non-verbal cues are tricky to read at the best of times — where possible, get feedback

later from a friend without a brain injury on how you went in conversations with other people.

Look interested Asking questions is only part of good listening.

It helps if you smile, nod and laugh in the right places. This is hard if you are depressed or nervous, but practice makes perfect. Again, get plenty of feedback from family and friends you can trust.

Practise with someone you know Exercising your listening skills can be hard in new social situations. Sit down with a good friend over coffee and deliberately practise these skills. Tell them you need to refine your listening, and ask them for feedback on how you are going. Ask them if the ‘personal space’ is right — sometimes, we unknowingly stand or sit too close to people after a brain injury.

Avoid alcohol and drugs Plenty of our social interaction revolves around alcohol. While you might feel more relaxed, it will only amplify difficulties with poor listening or raving on too much. Stick with the orange juice and work on your social skills instead!

14 / B R I D G E M A G A Z I N E

Fight back

The end of one dream can be the start of another Hello! My name is Pekka Hyysalo and I am a BackFighter. If you have no idea what this is, allow me to tell you.

My life was extreme all the time – I loved sports, especially skiing. I was a very talented freeskier and entered a special alpine academy in northern Finland. It was the dream, and after graduating I became a professional freeskier.

I was on a film shoot in Lapland when it all came to a tragic end. A blast of wind made me overshoot the kicker’s landing. It was the end of my dream, at least the first one.

Two months later I woke up in hospital

where I spent most of that summer. I didn’t even remember what my life was like outside of the hospital because my memory didn’t work.

I was transferred to the best rehab centre in Finland. I responded well to rehab and my very high levels of medication were stopped. All of a sudden the harsh truth dawned on me – my life is over. My dream had become a nightmare and I didn’t care about anything anymore.

This lasted for a week but if felt like years.

And no, it wasn’t nice at all. It was awful, but after a week, I woke up and suddenly it wasn’t horrible at all!

WWW.TEAMFIGHTBACK.COM FightBack’s mission is to support athletes with head trauma in their rehabilitation, and increase awareness on the importance of protecting oneself in sport activities. Many serious injuries can be prevented with the right use of helmet and other protective gear.

Founder Pekka Hyysalo is the very first athlete with a brain injury who is supported by FightBack. He takes an active part in the organization’s daily operations by giving the face to FightBack’s activities.

Participants of FightBack, all athletes with a brain injury, are called BackFighters, whose respective rehab and everyday life can be followed in blogs written by the athletes themselves. The more support obtained, the more BackFighters can be recruited.

15 / B R I D G E M A G A Z I N E

My official rehab finished and I was supposed to move to a sheltered home but they allowed me to move in with my girlfriend on the condition I was never left alone. I continued my personal rehab with physical, speech, occupational and neuropsychological therapies.

At the time of my accident, there was a short movie being filmed called ‘Hello!’ My good friend Miikka was the director and took it to all the freeski film festivals where it got noticed. I loved the film – if my dream had to come to an end, then it came at the right time.

I was still in my wheelchair when I went to the Finnish premiere and it was unreal.

Afterwards I started practising walking around, both with a walker or holding onto handrails, until the winter came.

We went to the local ski hill to practise walking on the children’s slope. I fell to the ground at least a hundred times a day. After two and a half weeks I reached a new record of 2300 steps! I still had serious problems with my entire left side, especially my left hand. My mother said “Once you can put on your left ski boot using your left hand you can go skiing again.”

I started training, immediately. Damn it was hard, but after three months of trying I got it on! It was now late autumn even though I couldn’t properly walk yet I knew I was a step closer to ski time.

At last in March I was back on my skis! My occupational therapist first took me to a Nordic skiing track, and once I survived that, it was downhill ski time! It was horrible. I probably fell thousands of times, but I survived and I was determined to get better.

One of our skiing trips took us to Austria where my little brother competed in the Austrian Freeski Open. I was filming the competition and a marketing manager associated with the event was my boss for the week. He mentioned a BMX rider, Steven Murray, who crashed his bike and suffered quadriplegia. His normal life was over but the ‘Stay Strong’ brand was established on his behalf to cover his rehab costs.

I was in a similar situation so the marketing manager suggested I do something similar. He said I was a fighter to which I nodded quietly.

“You want to get back?” he said.

“Haven’t you been listening…? YES!”, I said.

“I know the name of the brand” he said.

“How does FightBack sound to you?”

To me it sounded awesome, and three years later FightBack is my life. I have gotten help from so many people, and we’ve been able to expand the FightBack brand over time.

I have continued my own personal FightBack, by knocking down every one of the doctors’ predictions. I could walk and ski, but I couldn’t run. I had already decided whilst in hospital, that eventually I’d get myself together and learn to run again. And in my opinion, if I learned to run, I should run a marathon. What else?!

It’s easy. You just have to start running, and 42,6 km later, you’ve run it! Sounds simple enough, right?

I had to wait until the spring of 2013 to take my first running steps. I would run four steps and then fall over, just as I did when learning to walk. I kept training and about nine months later we filmed “FightBack”, a mini documentary about my running. I was invited to appear on a Finnish talk show and since then FightBack is very well known in Finland!

My first FightBack Run was 2.6 km in my hometown. My plan is to double up on that distance yearly, so that by Autumn 2018 I would have crossed the finish line of a Marathon. It is my goal, and I’m going to work for it until it’s accomplished.

Pekka flying high as a professional skier prior to his accident.

Pekka spent three weeks in a coma before gradually awakening.

Extreme rehab - even on crutches Pekka was pushing the limits

A FightBack training run with the marathon distance as a goal.

16 / B R I D G E M A G A Z I N E

Memory problems?

Although there is no wonder treatment for memory problems there are many effective strategies that a person can learn to improve the success of their memory. Organising the environment aims to arrange surroundings so that less reliance or demand is placed upon a person’s memory. Strategies for organising the environment include the following: • A notepad system beside the phone • A large notice board and making plans • A special place for objects which tend to go missing • Labelling or colour-coding cupboards as a reminder of where things are kept • Tying objects to places e.g. a pen to the phone or a key to a belt.

A survivor’s perspective Jeff Sebell on dealing with success and failure after brain injury

External memory aids? Examples include: • A diary for storing and planning • Notebooks of all sizes for various places • Lists and checklists • Alarm clock, wristwatch alarm and timer • Calendar • Wall chart • Tape recorder or dictaphone • Electronic organiser • Pill reminder box • Post-it notes • A memory book containing historical events, personal experiences and names.

Factors such as anxiety, stress, multiple demands and fatigue can have serious effects on concentration and memory. Therefore, the improvement of a person’s emotional and physical well-being will most likely have benefits for their mental alertness and ability to process information. Important considerations for improving general well-being include: • A balanced diet • Sufficient restful sleep • Regular exercise • Relaxation and stress-reduction strategies • Following prescribed medication guidelines and medical advice • Avoiding alcohol, cigarettes and other drugs.

17 / B R I D G E M A G A Z I N E

Those of us who have experienced a brain injury are always looking for some sort of advantage; some way we can get a jump start on the road to living a fulfilled life.

One thing that is not obvious to us which does have a great impact on our lives, is the way we deal with both success and failure. This is a great example of how we can use our way of thinking to help us. After a brain injury, failure seems to become a common theme, as we go about trying to reclaim our lives by trial and error. On top of that, we seem to derive meaning from every failure – sometimes greatly exaggerated meaning – about our abilities and future, and we sometimes live in a world where our failures run our lives. This has an effect on the quality of our lives and on our efforts to live a fulfilled life.

Success, on the other hand, doesn’t come as often or as easily as it used to, and means something quite different to us than it did before our brain injury. Many times, a major success for us is simply performing a task that used to come easily and while we think it’s a big deal or great accomplishment, others don’t see it that way.

For me, it was very important, when living my life after brain injury, that I learned how to “get something positive” from failing. Similarly,

I had to look beyond the euphoric feeling success gave me in order to see if there was anything I could take away that would benefit me beyond the success I experienced.

What probably helps me learn is the peculiar way that I react when I’m excited. Although I do get excited when I succeed at something, especially when it is something I am not sure I would be able to do, I tend to keep that excitement low key and to myself. I have always been this way, maybe more so since my brain injury, but I have managed to turn it into a tool I can use for my benefit.

One way to look at the way I am is that I’ve always tried to keep my life on an even keel, so that the highs weren’t so high, and the lows weren’t so low. That’s my way of helping to manage the ups and downs of my life, and it applies to failure as well as success. This is especially important after brain injury when we attempt things and seem to fail so much, and can make every failure into something bigger than it should be. What I have been able to see is that success and failure are really the same; they are both just outcomes.

Of course, that is very simplified, and, it goes without saying that we would rather succeed than fail, but it’s a good starting point. I must acknowledge that success or failure are not to

Staying part of the family

No matter what type of communication difficulty your family member is experiencing, it is vital that they still feel part of the family and contribute in whatever way possible. Here are a few ideas to help this happen and to support the flow of communication.

be taken lightly; failure can have far-reaching, ugly implications, while some successes can be life-changing. Those times aside, however, I look generally at success and failure as tools: when we try something we either succeed or we fail. By nature, success brings its own reward.

Failures, though, don’t bring rewards, and would be a complete waste if we didn’t learn and grow from them.

Both success and failure provide lessons that stay with us our entire lives, and I do my best to avoid judging them as good or bad. I don’t want to have my ego inflated by success, and similarly, I don’t want to be sunk in a “culture of failure” which can happen when we lament what society calls “failures”, and allow them to drag us down and set the tone for our lives.

Those of us who have experienced a brain injury need to learn or re-learn a lot of things based on trial and error, and we are going to fail at some things. That’s the way these things

work. By having a healthy relationship with failure, and looking at failure in a productive way, we don’t have to get caught up in a “culture of failure”. Being caught in a “culture of failure” makes it that much harder to have any successes and live a fulfilled life. This is work, thinking positively about our lives, and it’s not easy work.

However, the power of our mind is strong, and by looking at failure constructively, it’s possible to live in a “positive zone”, where we are not always down on ourselves for what we see as a failure, but we are more accepting of ourselves and our circumstances; experiencing life and learning about it as we succeed and fail.

ABOUT THE AUTHOR: Jeff Sebell is the author of “Learning to Live with Yourself after Brain Injury.” Read more about Jeff and his journey on his blog at www.TBISurvivor.com

TBI HOPE & INSPIRATION MAGAZINE This story is reproduced with permission from the TBI Hope & Inspiration Magazine. Meeting the needs of those impacted by a brain injury, the magazine features timely articles offering insight and perspectives from brain injury survivors, caregivers and family members as well as members of the professional and support community. Subscribe for free issues at www.tbihopeandinspiration.com

Have a visitors’ book and ask people to jot down what they have talked about, to give some sense of continuity to communications.

It is the give and take of communication that is important, not just what is talked about. Chat about ordinary things – the supermarket, mowing the lawn, the kids, and about things in the past when you know the subject and you can interpret their responses.

Share old photos and memories together or find picture books on things that interest, or used to interest, your family member.

Use the retail catalogues to help them choose presents they would like to give to others for birthdays or Christmas.

Even though dealing with writing or figures may be difficult, they may still be able to contribute to broad decisions about finances,* with someone else organising the details. For example, they may be able to sign a form that someone else has filled out or have an opinion about a household expense. *A social worker can help you with the legal aspects of assisting someone with financial decisions This article is reproduced from “Those who care” published

by Brainlink. Visit www.brainlink.org.au for more information.

18 / B R I D G E M A G A Z I N E

The amazing human brain The human brain is an amazingly complex system that we have been unable to duplicate, despite our incredible technological advances. And we still aren’t sure exactly how it all works.

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

Much of the beauty of the brain lies in its mindboggling complexity. The challenge is to transform this complexity into manageable proportions for our brains to digest.

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

If we lined up our nerve fibres they would stretch for 180 000 km while the number of synapses is around 0.15 quadrillion. When numbers like these are involved, it does not matter so much that we lose around 85000 neocortical neurons each day.

However, this complexity is why a brain injury can have such wide ranging effects on our movements, thoughts, sensations and emotions. The brain can be damaged as a result of an accident, a stroke, alcohol or drug abuse, tumours, poisoning, infection and disease, near drowning, haemorrhage, AIDS, and a number of other disorders such as Parkinson’s disease, Multiple Sclerosis, and Alzheimer’s disease.

Brain injury has dramatically varied effects, and no two people can expect the same outcome or resulting difficulties. The brain controls every part of our being: physically, intellectually and emotionally. When the brain is damaged, some other part of ourselves will also be adversely affected. Even a mild injury can result in a serious disability that will interfere with a person’s daily functioning and personal activities for the rest of their life. While the outcome of the injury depends largely on the nature and severity of the injury itself, appropriate treatment will play a vital role in determining the level of recovery.

19 / B R I D G E M A G A Z I N E

The Guddi Project “Come let’s begin to heal, come rest your mind, body and soul and finally come home and find that quiet, peaceful self.”

An innovative approach to health, disability & human rights for homeless Indigenous people with a neurocognitive disability The Guddi Project is a 12 month project which started in October 31, 2014.

A systematic literature review is underway to identify published and unpublished studies and reports which consider neurocognitive disability amongst Indigenous Australians who are homeless. Field work commenced in February 2015. By midMarch, 22 participants were recruited and 19 assessments completed. The Clinical Team are trialling ‘The Indigenous Disability Assessment Tool’ (IDA) which uses culturally appropriate measures. Blood and faecal samples are also collected for biomedical examination. Faecal samples enable the identification of human

parasite infection which causes a range of serious physical problems and is thought to impact on neurocognitive functioning. The rate of infection for Indigenous Australians living in rural and remote Australia is the highest in the world. Our results may assist individuals and provide important public health data to address this preventable condition. Qualitative data is also collected through formal and informal yarning and art groups and yarning circles may be used later in the project to facilitate dissemination of the findings and the development of culturally appropriate responses to the needs of homeless people with neurocognitive disability.

INTRODUCING DELINA ANDREWS The Cairns Project Coordinator is Ms Delina Andrews. Delina is a Luma Luma woman and on her mother’s side and father’s side she is Kuku Yulanji. Her family come from Yarrabah, Qld. She has completed a Bachelor of Arts and her studies included a focus on homelessness in Cairns. Delina is also undertaking a Masters of Social Science part-time and has skills in data collection in rural and remote communities.

I’m so tired my brain hurts Tired of cognitive fatigue?

Melanie Atkins has a bunch of handy tips.

Have you heard this or similar comments?

It’s real. It is termed cognitive fatigue.

And the good news is there are strategies to help minimise it.

Before I get to the strategies, here is a real life description to help explain what it is like. In an article in The Guardian newspaper Tim Lusher described his experiences following an abscess on the cerebellum, (the part of the brain that controls movement, balance and coordination).

“Ah, the tiredness. That’s another thing everyone talks about. It’s not a tough-week-atthe-office tiredness that you can rally through with a couple of drinks and the prospect of a weekend lie-in. It’s a leaden blanket of exhaustion that sweeps over you – utterly undeniable, non-negotiable and unshakable.”

Cognitive fatigue is common after a brain injury, whether mild, moderate or severe.

The brain is working harder to keep up all its functions, even ones that were once second nature. Eventually it is like an overload button, the brain needs a rest. Without rest it can lead to headaches, or becoming irritable, confused and sometimes increasing problems with behaviour.

What can you do about it? Well even understanding what it is, gives you clues about how you could assist a person manage it. Here are some ideas to get you started.

What can you do for cognitive fatigue?

Below is a list of strategies you might find useful to work with. Decide what might work with the person you are supporting and their network. Just choose the key strategies that might suit. Keep the change manageable for everyone involved.

Balance the daily routine with quiet times, rests, or restful activity; building in whatever rest time the person needs whether a short nap or a longer sleep time.

Help family and friends to understand cognitive fatigue and know that it is as a result of the brain damage, it’s not laziness or deliberate.

Plan ahead to allow opportunity for sleep and rest, program this into the daily plan before fatigue occurs. Work out what time of day is best for activity. We often talk about whether we are a morning, afternoon or evening person, this is important in planning to minimise fatigue.

Allow extra time to complete work that requires extra concentration and effort. Plan ahead for demanding activities, or when going to special events. Allow for extra rest time and/ or quieter routines before and after.

Use aids, equipment, and technology to reduce effort wherever possible. For instance if the person has mobility aids, encourage their use to minimise fatigue.

If helpful see about shorter days for school or work; and with frequent breaks according to need. Encourage saying no to activities or demands that are not important, or that would overly fatigue them.

If there are a number of activities or things to do on a day, work out priorities and tackle the important, or interesting tasks first. As much as possible have familiar routines and surroundings, which reduces the effort and need to concentrate.

Take notice of what factors contribute to fatigue and work out how to manage these as

much as possible. This might include the effect of medication, weather, or illness, people, and places.

Be aware that sensory overload can impact on fatigue; situations such as a busy shopping centre with lights and noise. Limit or avoid these situations.

Maintain optimal health and fitness. Take care with exercise that it is does not itself cause fatigue. Develop ways to manage fatigue if and when it occurs. Think about at home and when out.

You as a supporter can minimise fatigue by assisting where necessary, and where appropriate, in carrying out tasks, understanding what needs to be done, assisting to maintain agreed rest routines.

When looking at ways to manage fatigue remember it is better for a person to try and manage cognitive fatigue before, rather than after it happens. Plan to prevent rather than manage after fatigue occurs.

Finally remember to always work with the person and their support team when developing any strategies. Each person will have different needs and different responses. This may change over time. Consistency is a key.

Changed Lives New Journeys is a website created by Melanie Atkins for people interested in brain injury, particularly supporters of people with brain injury. Visit www.changedlivesnewjourneys.com for excellent brain injury resources and articles.

20 / B R I D G E M A G A Z I N E

Dizziness

I’m on the road again

People who say they feel ‘dizzy’ are usually referring to a sensation of turning round or whirling.

Alternatively, dizziness may be used to describe a swaying sensation, or a feeling of weakness, faintness, light-headedness or unsteadiness. It can occur following a brain injury due to: • Brain stem damage • Double vision • Blood pressure fluctuations from damage to areas that control heart /blood flow • Damaged areas of the cerebellum may lead to light-headedness or imbalance

Getting back behind the wheel can be crucial for maintaining our social connections & independence

• Vertigo from damage to the inner ear.

There are many medications available from over the counter motion sickness ones to prescription only medications. Therapy can treat balance and spatial problems with exercises that can make the vestibular system adapt to problematic movements.

Otherwise, some useful tips for everyday use are: • Don’t use alcohol or other drugs • Get out of bed slowly in the morning • Stop the moment dizziness starts and sit or lie down until it passes • Avoid or reduce problematic movements, or change your environment • Sleep without a pillow to keep your neck and backbone perfectly straight • Cut down on salt as this can increase the sensation of vertigo • Try to pinpoint times or conditions where you are more likely to get dizzy.

The good news is that dizziness is often only a short-term problem after a brain injury with suitable and timely treatment.

21 / B R I D G E M A G A Z I N E

Not all medical conditions affect driving performance in the same way and not all individuals with the same condition will be affected in the same manner. A person’s fitness to drive depends on their cognitive (thinking and perceptual) and physical abilities, and their ability to cope with unusual and emergency situations. Some people are able to compensate for changes in their abilities while others may not. The effects of Acquired Brain Injury (ABI) can sometimes be subtle and difficult to detect and may also creep up over time, affecting a person’s ability to drive safely.

Conditions that affect driving Physical changes: A person with ABI may experience physical weakness or poor coordination that comes and goes unpredictably, for example, affecting their control of the car.

Cognitive changes: These are changes in a person’s thinking or perceptual abilities. For example, difficulties with perception may cause problems judging gaps in traffic. Changes in vision and attention may leave them unable to see potential hazards in their peripheral vision.

They may have slowed response times, trouble concentrating or experience confusion, all of

which are dangerous when driving.

If there are doubts about your family member’s ability to drive, you need to encourage them to discuss this with a doctor or occupational therapist.

Stroke: After stroke or serious head injuries, doctors normally recommend that a person wait at least three months before driving again. The decision about if and when to return to driving should be made in consultation with a doctor and where appropriate, a driving assessor.

Driving assessment & specialist referrals A detailed assessment by a specialist occupational therapist driving assessor can detect subtle problems that affect driving ability. It may also be necessary to refer the family member to another specialist – e.g. to have their vision tested.

The carer’s dilemma Having a driver’s licence gives a person independence. Being forced to give up this independence can have a big impact on the person’s self-esteem and wellbeing. This is a sensitive issue that carers of people with ABI need to handle carefully.

Sleep well

Routine is vital for sound sleep. Go to bed at exactly the same time every night – even on the weekend.

Do not vary this by more than 15 minutes. That may sound extreme, but if you go to bed at the same time and get up at the same time each day, your body will adjust to that pattern.

Avoid caffeine and nicotine. These stimulants have a negative effect on the brain, and for some people it may increase the likelihood of seizures.

Don’t get the body stimulated with exercise late in the evening. Make sure your bedroom is at the right temperature and that the room is very dark. This can be very important because light plays a critical role in your sleep pattern. Make sure it’s quiet as well. Talk It is important to discuss your safety concerns with your family member in a sensitive but straightforward way. Some people will understand the problem clearly, others may deny there is a problem, especially if their condition has deteriorated slowly and they do not realise they are no longer safe to drive.

Some people will accept advice more readily from their doctor than a family member. You could ask your doctor to tackle the subject with your family member or see the doctor together and bring up the subject yourself. You or the doctor or an occupational therapist might suggest that the person has a driving assessment.

When the person decides to have an assessment themselves, it helps them to feel that the decision remains in their control.

If this is not possible however, it may be necessary to write directly to the relevant government department of transport, or ask your doctor to do so.

Legal obligations Drivers have a legal obligation to advise the relevant government department of transport of any permanent condition or illness that may impair their ability to drive safely. It is also the

driver’s responsibility to advise their private insurance company about any condition that may compromise driving abilities. Failure to do so may compromise the person’s insurance coverage in the event of an accident.

Transport options If driving is no longer an option, help your family member to plan other ways to travel, such as by public transport, community services or taxis. Try to arrange activities that don’t involve the use of a car and discuss positive reasons why these options work – they are more relaxing, quicker and there are no parking problems!

This article excerpt is reproduced from “Those who care” published by Brainlink, a Victorian-based service that is dedicated to improving the quality of life of people affected by acquired disorders of the brain, by providing support to their families and carers. Visit www.brainlink.org.au for more info.

with family members about respecting your need for a quiet environment.

So what about naps during the day? Some find that afternoon naps are essential due to the cognitive fatigue from a brain injury. However afternoon naps can disrupt your night time sleeping so it is important to experiment. It might be better to lie down and rest without allowing yourself to sleep.

When stress, anxiety and negative thoughts are involved, cognitive behavioural therapy can help. Your Brain Injury Association should be able to help link you up with a psychologist.

There are medications that can help you with sleep problems. Some medications are designed to promote sleep but they are typically avoided by doctors who treat brain injury. However, one option is using small doses of antidepressant medications which can be quite effective for some people experiencing sleep disorders after a brain injury.

22 / B R I D G E M A G A Z I N E

Steps to a healthier brain

Use it or lose it – some tips to get your brain into better shape Like our body the brain needs exercise.

Practicing skills leads to better performance, whereas unused parts of the brain stop working. Also ongoing mental stimulation provides some protection against mental decline. Challenge the brain by trying things you don’t already do, such as studying a new language. This creates new pathways that alternate routes when neurones die off in middle and old age. Just remember if you have a brain injury to take on tasks that are realistic.

If you have trouble with judgment you may need to discuss it with others first.

So how can you exercise and challenge your brain to reap the benefits? Exercising the brain is doing anything that makes you think. Some possibilities include: • Avoid using calculators • Swap TV for mind games or a book • Play games that involve memory (bridge) or thinking ahead (chess) 23 / B R I D G E M A G A Z I N E

• Take up a new hobby.

Nourish your brain with a healthy diet Like any high-performance machine, the brain needs top quality fuel – a well-balanced, low cholesterol, low saturated (animal-fat) diet.

Timing is significant as studies have demonstrated the importance of a good breakfast.

Not all fats are bad for you in the right quantities. Unsaturated fat and protein are especially important for developing brains.

Fish, a rich source of both, is sometimes called brain food. Your body converts long strings of amino acids in the protein you eat to individual amino acids that your brain converts to the specific proteins it needs.

Your brain needs vitamins and minerals that only come from a balanced diet. In particular research suggests anti-oxidant vitamins E and C protect the brain.

Avoid excess food. Reducing calories can help

slow age-related brain changes. If you must smoke, or drink caffeine and alcohol, do so in moderation.

Glucose is the fuel needed to keep the cells alive and functioning. When your concentration wanes in the late morning or afternoon, eating a snack containing healthier forms of sugar, such as fruit, can solve the problem.

As a general rule, good nutrition for the body is good nutrition for the brain.

Enjoy physical activity Exercise daily if possible by setting exercise priorities and sticking to them. Regular exercise reduces depression and reduces cardiovascular risk factors – even a simple walk lets you think freely.

Some heavy exercises may produce euphoria, but even 12 minute bouts of exercise (to 85% maximum heart rate) release serotonin,

dopamine, and noradrenaline that can act like antidepressant medications.

Exercise in the evening after a stressful day.

Take exercise opportunities like using stairs instead of elevators.

Make “safety first” a priority Brain trauma is the silent epidemic. The major causes of adult head trauma are motor vehicle accidents, on-the-job accidents, falls, assaults and sports injuries. Take commonsense safety precautions including wearing seat belts and sports safety helmets when needed.

Remember that if you have an existing brain injury you are much more susceptible to acquiring another one.

Manage anxiety, stress & depression Anxiety increases heart rate and blood pressure, which can lead to stroke. Acute stress such as the “flight or fight reaction” is normal and short-lived. There is increasing evidence that stress actually damages the brain. The hormones linked to stress can actually kill nerve cells in animals and are thought to do the same in humans.

The steps you take to reduce stress are likely to preserve nerve cells and help maintain mental abilities which are crucial if you already have a brain injury.

One of the toughest stresses is depression. It affects memory, slows brain metabolism, and can lead to some degree of brain damage. Some strategies for coping are: • Meditation • Relaxing by actively tensing then relaxing individual muscle groups • Channelling internal stress into external action through exercise • Let go of things outside your control • Ensure a balance of work and recreation • Let go of things outside your control • Take time out for yourself • Visit your general practitioner.

Relax and sleep well During deep sleep, the brain repairs itself and boosts the immune system. During rapid eye movement (REM) sleep, the brain consolidates information learned during the previous day. Poor sleep leads to fatigue and immune suppression, along with memory, concentration and mood disorders. Learning is hard when you aren’t sleeping well.

What can you do if you can’t get to sleep?

The most common causes are not being able to shut off the anxieties and worries of the day, and preparing for tomorrow’s problems. Useful strategies include:

• Don’t take one last look at email messages • No phone calls or activities after 9 pm • Don’t go to bed until you feel sleepy • Don’t have caffeine after noon.

Blood pressure, diabetes & cholesterol If you have diabetes and high cholesterol, you have four times the risk of stroke. If you have diabetes, you have twice the risk of stroke.

Experiencing many mini-strokes can lead to dementia in later life.

Avoid alcohol & other drugs if possible Alcohol and other drugs affect the central nervous system, impair the ability to think clearly,

control

emotions

and

monitor

behaviour. These abilities are often impaired by a brain injury and therefore when people use drugs and alcohol they are likely to experience even greater problems with alertness, memory, problem-solving and controlling their behaviour and emotions.

Many thanks to Brain Foundation for their kind permission to condense an article from Brainwaves, Newsletter of the Brain Foundation. You can visit their website at: http:// www.brainaustralia.org to read the complete article and a wide range of other information.

HANDS UP! Upper Limb Bootcamp Recover function and independence after brain injury: 1

Equipment: Cutting-edge technology gives you the edge

2

Intensity: 4 hours a day, 5 days a week, 2 weeks

3

Team: Experience matters

Book your assessment today!

Advance Rehab Centre St Leonards, Sydney w: www.archealth.com.au/handsup t: +61 2 9906 7777

www.archealth.com.au 24 / B R I D G E M A G A Z I N E

Communication problems

Families, co-workers, teachers and friends can play an important role in helping a person improve communication skills that have been affected by a brain injury. This is particularly the case where they work in with the speech therapist to provide consistent support in the strategies being learned by the brain injury survivor. Family should ask questions and expect to be involved in the process of rehabilitation.

Anger, acceptance & action

Approaches to use when communicating with someone with a brain injury include: • Acknowledge the injury and be supportive • Prompt the person to evaluate their own speech and be aware of issues • Work with the person to find out what techniques assist them to communicate • Use open and non-judgmental questions • Allow people to take extra time to finish their sentence or to find a word • Speak clearly and simply when there is a receptive communication deficit • Use paraphrasing and summarising to ensure understanding • Simplify terms into everyday language.

Approaches to avoid are: • False reassurance • Minimising a person’s feelings • Pressuring the person beyond their current ability • Finishing sentences for people who lose track of what they were saying • Speaking excessively loudly or slowly • Arguing with a person or telling them that they are being irrational • Using technical jargon and lengthy explanations that the person cannot understand or follow.

25 / B R I D G E M A G A Z I N E

Peter Dickinson is one of my favorite authors. He writes mysteries, but they are always more than mysteries. They are beautifully crafted stories that shed light on the human experience, stories that make you stop and reread a sentence two or three more times before you are willing to leave it there on the page and move on.

I just finished one of his latest books, Some Deaths Before Dying, and there was a sentence in it that I’ve not been able to forget, perhaps because it was said by the lead character, a woman who was dying from a degenerative muscle disease and at the time of the story was bedridden, able to just move her eyelids and speak only haltingly. She had been a vibrant woman who in her healthier years had to some extent been a caregiver for her husband who had been a prisoner of war during World War II and came home bearing psychological scars. In referring to what had happened to her husband, and therefore to her, she thought: “She too had been betrayed by happenings beyond her sphere, and now she was expected to live and behave like a normal citizen, despite that.”

The sentence took my breath away - “betrayed by happenings beyond her sphere, and now she was expected to live and behave like a normal citizen, despite that.” Indeed isn’t that what has happened to all of us who now answer to the title of caregiver? Isn’t that what has happened to the spouses, parents, children, siblings for

whom we care? We have been betrayed by things we couldn’t control and presented with the daunting challenge of trying to recreate normality.

It isn’t an easy thing to do – recreate normality when you’ve been hit by what feels like the equivalent of an atomic blast, and yet that is what is expected of us, and indeed what we always strive to do. But I have come to realise that for me and my husband Steven, normality is very different than it is for families that don’t have to deal with disability, with the almost perverse attention to the basic acts of life that come with it and the myriad arrangements we must make to do ordinary things.

And we have created a new normality for ourselves. It is the pattern of our day-to-day lives, given Steven’s current level of disability.

In the early days of his illness, when he could still walk, we had a different definition of normality, and I know that as his MS progresses, we will have to redefine normality yet again. I haven’t decided whether it is easier to do when the changes come gradually, or when they come because of a more dynamic occurrence. Certainly gradual change is easier to assimilate into your life, but it lacks the clarity of catastrophe and doesn’t always give you the opportunity to recognise the change for what it is, because it sort of oozes its way slowly into your life.

But regardless of whether the changes come

Coping with the hospital phase

In some hospitals, all patients with brain injury are admitted to the neurosurgical unit and cared for by the neurosurgeon. However, patients with multiple injuries may be attended by a number of specialists.

For example in cases of bone injury, an orthopaedic surgeon will be in charge. In the Intensive Care Unit, a registered nurse (RN) is always available and assigned to patients.

Coping with events beyond our control is necessary to retain our connections with others swiftly or slowly, they play havoc with our emotions, and we are forced to deal with what I have come to think of us as the bridge between anger and acceptance. Anger, an emotion we have been taught to try and hide, I have come to think of as a very healthy emotion, one that reminds us that we are very much alive and that we burn with the fire of desire for the good things of life. Expressing our anger at the difficulties we face, the indignities we must endure, at the complex arrangements to be made to do what should be simple tasks done by rote, is healthy; to rail at the Gods is okay – for a time. But anger that is continuous, that can’t be soothed, that lies buried beneath a calm exterior and festers like a dirty wound: that isn’t healthy. Anger must eventually give way, move beyond itself to acceptance of our situation: not placid acceptance that saps our energy, but a dynamic acceptance that translates into actions that help us make the most of our transformed lives.

Despite the difficulties we confront, life awaits us. It challenges us, more than it does the families of the able-bodied and mentally fit. We all wish it would challenge us less, to be sure; but it is the hand that we have been dealt, and the artistry of our life is defined by the picture we create without “less than normal” assortment of crayons.

My life has been “betrayed by happenings beyond my sphere” and for many years I could

not accept that. But at some point I crossed the bridge and consciously chose to accept my new reality. Now I act very purposefully with open eyes, and strive to “live and behave like a normal citizen”. I find it requires help. I can’t do it alone, so I call on others to help Steven and me live as normal a life as possible. Sometimes the help I need I must purchase, such as modifications in our home. At other times, the help comes in the form of kindly people who are willing to go out of their way to lend Steven an extra hand.

Anger, acceptance, action: they have become a triad in my life. Anger is the emotion that churns my soul and acceptance is the balm that soothes it, but action is what allows me to live a life that is full of hope and meaning. I hope it is the same for you and all of us who have “been betrayed by happenings beyond our sphere”.

This is an excerpt from “Love, Honor and Value – A family caregiver speaks out about the choices and challenges of caregiving.” The author is NFCA’s President and Co-founder Suzanne Mintz. You can view their website at www. nfcacares.org Reproduced with permission of Angelle M. Sander, Ph.D., with Baylor College of Medicine and TIRR Memorial Hermann.

Understanding medical terminology can be difficult, especially during times of stress. However, it is better for people to ask questions than to not understand what is happening.

It is common for hospitals to hold meetings with family members and various members of staff involved in the patient’s care. The best interests of patients and their families are easily overlooked during times of stress. This can occur unintentionally as a result of a lack of necessary resources, work overload or poor communication. Most hospitals provide support to obtain information and make decisions. The person providing this support is often the social worker.

For family members and close friends, this may be one of the most stressful and emotional times in their life. People must look after their own emotional and physical health if they are to care for the patient and other family members. Support groups may be available at the hospital or through your local Brain Injury Association.

Coping strategies The following ideas are designed to help friends and relatives come to terms with the traumatic experience of having someone sustain a brain injury: • Acknowledge your personal reactions • Reduce sources of stress in your life • Accept support whether it be talking things over or getting help with the housework • Talk with other people about your feelings • Be aware other family members may deal with the situation very differently to you • Maintain a sense of normality and make a routine for structure in your life • Ring your local Brain Injury Association for advice on community services and support groups.

26 / B R I D G E M A G A Z I N E

A hard act to swallow A brain injury sometimes results in dysphagia difficulty with chewing and swallowing

Dysphagia is a medical term for difficulty with chewing and swallowing. The condition is common after brain injury, particularly in the early stages after severe injury when it requires management in hospital. In some cases, the condition can persist and will need to be managed in the long term.

Dysphagia is caused by injury to some areas of the brain and to nerves and muscles of the head, face and neck. There are two main types of dysphagia associated with brain injury: • Oral dysphagia refers to difficulty chewing and controlling food and drink in the mouth.

This includes being unable to close the lips, move the tongue and transfer food to the back of the mouth before it’s safe to swallow.

• Pharyngeal dysphagia refers to difficulty swallowing food and drinks. Swallowing is a complex sequence of muscular actions that are controlled by the nervous system. If this process is interrupted because of a brain injury, food may ‘go down the wrong way’ and become caught in the throat or enter the airway.

Dysphagia can cause profound effects on health if it isn’t managed correctly, leading to malnutrition and dehydration because of inadequate intake of food and fluids. Some people can also have a tendency to develop

chest infections requiring treatment. One of these infections is called aspiration pneumonia, which is caused by food or fluid getting into the lungs and damaging them. This condition requires treatment with antibiotics. Dysphagia can also impact on quality of life by reducing people’s enjoyment of meals and social occasions.

TREATMENT FOR DYSPHAGIA There are two main types of feeding tubes: • Nasogastric tube (NG) – This type of feeding tube is passed down the nose and into the stomach. They are only designed for shortterm use in the acute stage of treatment.

• Percutaneous endoscopic gastrostomy tube (PEG) – This type of tube is surgically implanted directly into the stomach. They are designed for long-term use and can sometimes last for about two years before needing to be replaced. PEG tubes can be concealed under clothing, allowing discretion for people who need them long-term. However, they do carry a risk of infection and can become blocked or displaced. People who use PEG tubes also sometimes become reliant on them and find it difficult to resume normal feeding.

You should always discuss treatment options with the relevant professionals. SLTs and

ASSESSMENT OF DYSPHAGIA Doctors, speech and language therapists and dietitians will carry out a range of tests in order to determine the type of dysphagia, the nature of the chewing/swallowing difficulties and how they are affecting the person. These assessments include the following brief examples in the order they tend to be used: Hydration assessment – The patient’s level of hydration is assessed by taking blood or urine samples.

This is to ensure that they aren’t dehydrated.

Malnutrition screening – Different screening tools for malnutrition may be used, usually involving measuring height and weight to calculate body mass index (BMI), asking about unplanned weight loss and any illnesses, and carrying out blood tests.

27 / B R I D G E M A G A Z I N E

dietitians are available in most hospitals and anyone suffering from dysphagia should be referred to them. Community services are also available in many areas and can be obtained from a GP or by self-referral. Many SLTs and dietitians also work in private practice and directories are available. It is very important to work with registered and regulated professionals who are trained in dealing with dysphagia.

The following suggestions can help to compensate for swallowing difficulties.

Remember, it is important to discuss any dietary modifications or use of equipment with a trained professional. In particular, anyone who requires non-oral nutrition should not be offered any form of modified diet without specialist advice.

COPING WITH DYSPHAGIA Modify texture & consistency of food Dysphagia can make food of normal consistency and texture difficult to eat. A solution is to modify the texture of foods.

Drinks and foods can be thickened using commercial thickeners, which makes thin liquids and pureed foods safer and easier to swallow. The types of difficulties vary between individuals and some people may benefit from other texture modifications.

Upright position during and after eating It can help the swallowing and digestion process to be positioned upright during a meal and for 30 to 60 minutes afterwards.

This applies to both foods and fluids taken by mouth, and to PEG feeds.

Make food appetising For people who have difficulty at the first stage of swallowing (the oral preparation stage), making food look and smell good can make swallowing easier by triggering the production of saliva.

PROCESS OF CHEWING & SWALLOWING Normal chewing and swallowing is a complicated process involving both conscious and sub-conscious areas of the brain, such as the swallowing centres in the motor cortex and brain stem, the cranial nerves and many other nerves and muscles. Understanding how swallowing occurs can help understanding of how problems develop. Normal chewing and swallowing can be understood as occurring in the following stages: Stage one - Oral preparatory stage The anticipation, sight, smell and taste of food stimulates appetite, triggering the production of saliva which helps to prepare for the process of chewing.

Stage two - Oral stage The lips are sealed and the tongue, cheeks, soft palate and teeth combine to chew the

food to make a soft bolus (a small, round mass). The tongue moves the bolus to the back of the mouth to trigger swallowing.

Stage three - Pharyngeal stage Once the food reaches the area at the top of the throat called the pharynx, muscles automatically contract to allow swallowing to occur. Two tubes called the trachea and oesophagus emerge from the pharynx.

The trachea passes air to the lungs and the oesophagus passes food to the stomach. Parts of the throat called the larynx and epiglottis close during swallowing to prevent food going down the trachea to the lungs and upper airways.

Stage four - Oesophageal stage The valve at the top of the oesophagus opens, then muscles in the oesophagus contract automatically, pushing the food

Fortify food and drinks Vitamins and nutrients can be added to foods in order to overcome dietary deficiencies.

Vitamin supplements can also be taken, but this can be difficult if swallowing tablets is a problem. A dietitian can advise on these issues.

so they don’t have to swallow extra water.

Use specialist equipment Items of equipment, such as one-way drinking straws, are available which can help with eating and drinking difficulties. A speech and language therapist should be consulted on the appropriate equipment to use.

Taking medication Some forms of medication can be dangerous for people with dysphagia. For example, tablets with outer casings can be difficult to swallow.

However, you should never remove the casing or crush tablets. It is extremely important to discuss dysphagia issues with the doctor when medication is prescribed.

Maintain good oral hygiene & moisture It is important to clean the teeth and gums because dysphagia can cause the mouth to become dry and sore, which can lead to infections if oral hygiene is poor. Some medication can add to these difficulties by reducing saliva production. Swabs and petroleum jelly can be used to maintain moisture. Ensure that the method of cleaning takes account of the person’s swallowing difficulties. For example, use a swab that is damp rather than soaking wet

Eating at restaurants Many restaurants will prepare meals to meet the needs of people with dysphagia.

Requirements should be discussed with the restaurant in advance.

Eating with other people Another person who understands the difficulties can help the person with dysphagia to eat, or can help if choking occurs. It can help to eat in a setting the person is comfortable in and with few distractions.

Eating while alert & at the right pace Coordination can be impaired by tiredness, so it is advisable to eat when feeling alert.

SIGNS OF DYSPHAGIA It is very important to visit a GP as soon as possible if any of these symptoms are recognised: • Difficulty swallowing • Coughing or choking • Frequent chest infections • Weight loss or leaving food at mealtimes • Changes in breathing if eating or drinking • Eating very slowly • Bringing food back up • Drooling • Wet, gurgly, weak or absent voice • Dehydration • A feeling of food being stuck in the throat • Pain when swallowing • Pooling – holding food or fluid in the mouth without swallowing.

down towards the stomach.

Problems will occur if anything affects the nerves, muscles or passageways which are involved in these processes. Difficulties at each of the stages will cause different problems and symptoms.

After a brain injury, it is more likely that stages one to three will be affected. This can be a direct result of damage to the main swallowing centres of the brain or to the nerves and muscles controlling swallowing.

It can also be influenced by other effects of brain injury. For example, if the senses of taste and smell are impaired then the oral preparatory stage will be affected and the production of saliva will not be stimulated.

Stage one can also be affected by severe cognitive issues. People may not understand what food is or have an awareness that they are about to eat.

This also helps with maintaining an upright posture before and after meals. It is important not to eat too quickly and to chew thoroughly.

SLTs can help to decide the right pace for each individual.

OTHER ISSUES TO CONSIDER The process of chewing and swallowing is complex, involving many different areas of the brain as well as numerous muscles and nerves of the head, face and neck. Injury to any part of this system can lead to dysphagia.

The condition can have serious effects on health and quality of life. If not managed correctly it can lead to malnutrition, dehydration and chest infections. People can also find that their enjoyment of meals and social occasions is reduced, leading to low mood and loss of confidence.

It is very important to diagnose the form of dysphagia swiftly, and to treat it effectively.

Speech and language therapists and dietitians are usually the most appropriate professionals to do this. If you or someone you know are affected by any of the problems discussed in this fact sheet, it is recommended that you speak to your GP and seek referral to an appropriate specialist as soon as possible.

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

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

28 / B R I D G E M A G A Z I N E

Anxiety & brain injury This normal survival reaction can spriral out of control into various serious disorders

It is normal to feel anxious or worried from time to time. In fact it can be helpful in some situations. For example, think about how you might react if a lion approached you. You would probably respond with fear – your brain would send messages to the body to get ready to physically fight (fight response), or to run away from the situation (flight response).

This experience of fear is part of helping us survive.

Anxiety is common in less threatening situations too. For example, it can be normal to feel anxious before a job interview or speaking in front of a group of people. This type of anxiety can sometimes be a good thing as it pumps people up ready to perform. Normal worry is relatively short-lived and leads to positive problem-solving behaviour.

Worry or anxiety is unhelpful when it relates to a number of things, occurs often, is extreme for the situation, and stops you from doing things that need to be done. Anxiety can be experienced in different ways. Feelings of worry, fear or apprehension may be accompanied by physical symptoms such as a racing heart,

29 / B R I D G E M A G A Z I N E

butterflies in the stomach, rapid breathing, sweating or shaking, muscle tension.

How common are anxiety disorders?

These are very common. One in four people will experience an anxiety disorder at some stage of their life. After a brain injury, it is estimated that between 18% and 60% of people will experience an anxiety disorder – the most common are post-traumatic stress disorder and generalized anxiety disorder. There are many types of anxiety disorders and each has different symptoms.

Generalised anxiety disorder (GAD) This involves constant worry about many different things that are often out of one’s control e.g. finances, health, work or personal relationships. The worry is uncontrollable and interferes with the ability to focus on activities – it can also be accompanied by feelings of tension, irritability, restlessness and difficulty sleeping.

Post-traumatic stress disorder This is a psychological reaction to a traumatic event such as a life-threatening attack, accident or witnessing someone being killed or severely

injured. These traumatic events are outside the range of usual human experiences. The response is usually one of intense fear, helplessness and horror. Some of the reactions or symptoms people may experience following a trauma include: • nightmares, flashbacks and sleeping problems • feeling numb or detached from others • racing heartbeat, shortness of breath, dizziness, sweating, or flushes • difficulty concentrating • irritability • loss of sense of control • being easily startled.

Social anxiety Social anxiety is used to describe anxiety and fear arising from being in social situations, such as meeting new people, talking in front of people, being watched while doing something (eating, drinking, writing your name). This fear is accompanied by physical symptoms of anxiety and usually leads to avoidance of social situations.

Panic disorder Panic attacks consist of a frightening set of

• fear of doing something unacceptable.

Typical compulsions include: • excessive cleaning or washing • putting things in a particular order • repeatedly checking • hoarding • mental acts such as silently repeating a prayer or counting.

People with OCD are unable to stop thinking the obsessive thoughts and feel driven to perform the compulsive behaviors in order to control their anxiety and distress. OCD can be a debilitating disorder. Some patients feel compelled to perform rituals for hours at a time; this often interferes with their ability to fulfill social roles, such as work or parenting.

physical symptoms that may include: • heart palpitations and sweating • shakiness or trembling • shortness of breath, feelings of choking, chest pain, nausea, dizziness • feelings of detachment or unreality • fear of losing control • fear of dying • numbness or tingling, and hot or cold flashes.

Panic attacks have a sudden onset and usually peak within 10 minutes. A panic attack may include anxiety about being in a situation where escape is difficult (such as being in a crowd or on a bus). A person who has panic disorder often lives in fear of having another panic attack, and may be afraid to be away from home or far from medical help.

Obsessive-compulsive disorder (OCD) This involves uncontrollable and unwanted thoughts (obsessions) and repetitive behaviour or rituals (compulsions). Typical obsessions include: • fear of being contaminated by germs or of becoming ill • fear of causing harm to oneself or others

Anxiety after a brain injury The causes of anxiety disorders are not fully understood. Some of the factors that contribute to anxiety include; genetics, chemical imbalances and structural changes in the brain.

A brain injury may make someone more likely to experience an anxiety disorder due to the impact the injury has on the brain and the changes in thinking, behaviour and emotions that can occur.

People who have low self-esteem and difficulty coping may also be more prone to anxiety disorders. There can be some overlap between anxiety symptoms and changes after a brain injury, so it is important to speak to your GP or a mental health professional who understands brain injury if you think that you may have an anxiety disorder. Anxiety can impact on everyday tasks, relationships, wellbeing, and your recovery after a brain injury, so it is important to seek treatment.

How are anxiety disorders treated?

Psychological therapy offers the most successful form of treatment for many anxiety disorders. Therapy typically includes techniques that help a person relax and manage the physical symptoms of anxiety, talking through and identify issues causing the anxiety, as well as strategies for facing fears and dealing with worrying thoughts. Because this approach targets the underlying problem, they offer hope of a cure rather than temporary symptom relief.

Treatment may also involve taking medication for a period of time. However, psychological therapy is more effective than drugs in managing anxiety disorders in the long term. Speak to your GP if you would like to be referred to a psychologist.

This is fact sheet is reproduced with the permission of ABIOS (Acquired Brain Injury Outreach Service). Visit www.health.qld.gov.au/abios/ to see their full range of fact sheets. ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families.

Some tips for managing stress Visualisation Use your imagination (e.g. pleasant daydreams or memories) to will yourself into a relaxed state. Start by getting comfortable, scanning your body for tension and relaxing the muscles.

Select a favourite place which is real or imagined.

Focus your imagination using all five senses, then use affirmations such as repeating ‘I am letting go of tension’; or ‘I am feeling peaceful’.

Practice using visualisation three times a day for a few minutes or longer. Eventually, with practice you can use visualisation in everyday situations when feeling uptight.

Its effectiveness requires evaluation! Note the physical, mental and behavioural signs of stress each time and try different strategies and see which works better.

Slow breathing techniques Proper breathing habits are essential for good mental and physical health. First, a person needs to focus upon their breathing pattern.

They need to identify whether they breathe mainly through the chest or through their stomach. Short, shallow and rapid breaths from the upper chest should be avoided. The aim is to breathe deeply and slowly through the nose.

A person should feel greater movement in the stomach than the chest as they inhale and exhale. Practice breathing exercises everyday.

Learn to apply slow breathing as needed e.g. when feeling stressed, angry or anxious.

Progressive muscle relaxation A person learns to identify muscle groups and the difference between tension and relaxation in the muscles. Focus on the four main muscle groups: 1 Hands, forearms and biceps 2 Head, face, throat and shoulders 3 Chest, stomach and lower back 4 Thighs, buttocks, calves and feet.

Tense muscles for five to seven seconds then relax for 10 to fifteen seconds.

It should only take a week or so to master with two 15 minute sessions per day.

30 / B R I D G E M A G A Z I N E

/ •

Income Protection Claims