In this issue:
SPORTS AND CONCUSSION Mild concussion Brain Injury Awareness Week 13-19 August 2012 Bang On A Beanie 1 / BRIDGE MAGAZINE
Memory & learning after a brain injury
BRIDGE VOLUME 7 - June 2012 ISSN 1448-9856 General Editor: Barry Morris Project Manager: Glen Farlow Contributing editors: Lisa Cox Clare Humphries Emily Ma Synapse PO Box 3356 South Brisbane 4101 P: 61 7 3137 7400 F: 61 7 3137 7452 E: firstname.lastname@example.org W: www.synapse.org.au Bridge is produced by Synapse (formerly Brain Injury Association of Queensland). Published quarterly, it welcomes contributions and news items, especially from members. Advertising rates are available on request. Synapse is dedicated to improving the quality of life of people living with and affected by Acquired Brain Injury, or people whose behaviour challenges our understanding.
Stress Stress is a natural reaction in adjusting to major life changes
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.
Memory affects how you learn
One manâ€™s experience on emerging from a coma
Supported by financial assistance from
INDEX 03 04 05 07 09 11 13 15 17 19 21 22 23 24 25 27 30 1 / BRIDGE MAGAZINE
What is concussion? Sports-related concussion Memory & learning after a brain injury If life throws you lemons make lemonade Time bang on about beanies again Minor head injury discharge advice Understanding & managing depression Demystifying brain injury Stress Vocational aids & equipment Impaired self-awareness After rehabilitation Synapse in Japan Impact on carers Headaches Positive ways to manage behaviour Waking up
The most common traumatic brain injury A big issue for sports-mad Australians Strategic tips from ABIOS The inspiring story of Lisa Cox Raising awareness about brain injury What to do after leaving the hospital Psycare advises on beating the blues Interview with L.B., brain injury advocate How to not let it ruin your life Setting up your computer & workstation A troublesome area with frontal lobe injuries How do we keep the recovery going? Building Japanese brain injury resources Carers are often forgotten during rehab The most common concussion symptom Great tips for family members Personal story on emerging from a coma
bridging THE GAP Jennifer Cullen CEO of Synapse
BangOnABeanie and spread the word Acquired Brain Injury (ABI) affects over 1.6 million Australians or 1 in 12 (World Health Organisation, 2007) and is often referred to as the “Invisible Disability” because there are often no outward signs that a person can have a life-long disability. Around twice as many people are diagnosed each year with ABI compared with those for breast cancer and yet very few people know about it (AIHW, 2010). In response to this massive need, Synapse in collaboration with Brain Injury Associations across Australia, decided to turn an invisible disability into a very visible one; hence BANGONABEANIE was born. BANGONABEANIE is a national campaign raising awareness of ABI for Brain Injury Awareness Week (BIAW) 13 – 19 August, 2012. Buy and wear a blue beanie and show your support for those affected, their family and friends. All money raised goes towards accommodation for young people, and
educational resources for families. ABI doesn’t discriminate and can affect anyone at any age. Unfortunately it is often young people and the most at-risk in the community that are affected, such as those homeless, in the criminal justice system, Indigenous, or soldiers returning from war. Queensland holds the highest national average for those affected each year, often from motor vehicle accidents, stroke, violence (when that “one punch” doesn’t kill), but also from other diseases like Alzheimer’s, Parkinson’s and Cerebral Palsy. The central theme for Brain Injury Awareness Week is “Sports-related head injury”, including concussion and Chronic Traumatic Encephalopathy (CTE) which has received a lot of press recently due to the significant and lifelong impact on professional athletes from AFL, rugby, boxing and horse racing. Because of the invisible nature of ABI, many people will either be misdiagnosed with another
disorder like mental health, or never diagnosed in the first place. Subsequently, the true figure of those affected in Australia is much higher than the 1.6 million people reported by the World Health Organisation. The reality is that everyone knows someone affected by Acquired Brain Injury, but there is so much stigma and such a lack of awareness. The beanie is designed to start a conversation in the community because we wanted to create something fun that was also going to educate people. ABI affects everyone differently, so we are interested in meeting the needs of those people, not in labelling them with a disability. BANGONABEANIE is also designed to increase the capacity of the community sector as a whole. To reinforce the prevalence of ABI, any Not-For-Profit or Charity who sells a blue beanie on behalf of the campaign, retains 50% of the profit per beanie sold. Buy a beanie or donate now at http://bangonabeanie.com.au.
Synapse is funded by Home AUSTRALIAN NETWORK OF BRAIN INJURY ASSOCIATIONS and Community Care, a joint QLD Synapse Inc. Tel: 07 3137 7400 Email: email@example.com Web: www.synapse.org.au Synapse is Commonwealth funded by Homeand andState/ AUSTRALIAN QLD Headway GoldNETWORK Coast Tel: 07 5574 4311 Email: firstname.lastname@example.org Web: www.headwaygoldcoast.org OF BRAIN INJURY ASSOCIATIONS Territory program providing Community Care, a joint CommonAUS Brain Injury Australia 1 8001049 BRAIN1 Email: email@example.com Web: Web:www.braininjury.org.au www.braininjuryaustralia.org.au and assistance Tel:Tel: 07 3367 Email: firstname.lastname@example.org wealth and funding State/Territory program for QLD Brain Injury Association of Qld NSW Brain Injury Association of NSW Tel: 02 9868 5261 Email: email@example.com Web: www.biansw.org.au Australians in need. providing funding and assistance AUS Brain Injury Australia Tel: 02 9591 1094 Email: firstname.lastname@example.org Web: www.braininjuryaustralia.org.au VIC BrainLink Services Tel: 03 9845 2950 Email: email@example.com Web: www.brainlink.org.au for Australians in need. NSW BrainBrain InjuryInjury Association of NSW 02 9868 5261 Email: firstname.lastname@example.org Web: TAS Association of Tasmania Tel:Tel: 03 6278 7299 Email: email@example.com Web:www.biansw.org.au www.biat.org.au VICWABrainLink Services Headwest
Tel:Tel: 03 9845 2950 Email: firstname.lastname@example.org 08 9330 6370 Email: email@example.com NetworkofofTasmania South Australia 08 8217 7600 Email: firstname.lastname@example.org TASSABrainBrain InjuryInjury Association Tel:Tel: 03 6278 7299 Email: email@example.com Community Services 08 8920 4100 Email: firstname.lastname@example.org SA NTBrainSomerville Injury Network of South Australia Tel:Tel: 08 8217 7600 Email: email@example.com NT
Somerville Community Services
Tel: 08 8920 4100 Email: firstname.lastname@example.org
Web: Web:www.brainlink.org.au www.headwest.asn.au Web:www.biat.org.au www.binsa.org Web: Web:www.binsa.org www.somerville.org.au Web:
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What is concussion?
Concussion is the most common form of traumatic brain injury. Its precise definition varies around the world, but generally it is regarded as a mild type of brain injury where the effects are not permanent. While it is the mildest form of brain injury, treatment and care are still very important. There is an increasing tendency to use the term “mild traumatic brain injury” but the term “concussion” is still widely used, particularly in sport. Symptoms will generally disappear by the time three weeks have passed. It is important to note, however, that there is growing evidence that injuries defined as concussion, and even repeated impacts that are sub-concussive, can lead to permanent brain injury (see next article). Causes of concussion Concussion results from either a direct blow to the head, or rapid movement of the head (e.g. whiplash in a car accident). Car accidents and falls tend to be the most common causes in most countries, along with other causes such as assault, injuries playing sport and bicycle accidents. Concussion is therefore not only common among young people, as the ageing population frequently experiences falls. Symptoms of concussion Headache is the most prevalent symptom, along with nausea, ringing in the ears, loss of balance, poor coordination, sensitivity to light and blurred vision. Occasionally there may be seizures but these do not necessarily indicate that ongoing seizures or epilepsy will 3 / BRIDGE MAGAZINE
be ongoing issues. There may be a temporary period of unconsciousness, as well as confusion, inability to remember events before the injury, and slurred speech. Some symptoms that may continue for a few weeks include fatigue, difficulty concentrating, emotional lability, poor sleep and irritability. Treatment of concussion Treatment mainly involves monitoring and rest. Monitoring is important, not only because symptoms could worsen rapidly, but to ensure that in the long run there are no permanent changes to brain function. Rest is also important to allow the brain time to heal. If the concussion occurred playing sport, it is critical not to play again too soon as a second concussion acquired before healing from the first can become life-threatening. Sports such as boxing have revealed that
concussions can gradually result in permanent brain injury. Prevention As mentioned, falls are a common cause of concussion for the elderly, so prevention involves hand rails, uncluttered, even floors with no rugs, avoiding stairs where possible, good footwear and non-slip surfaces in wet areas. Among younger people, the prevention for the most common causes involves safer driving and always wearing seat belts, the use of headgear (such as helmets) in relevant sports, and enforced rest from sport to avoid acquiring a second (and more dangerous) concussion. Any sport that involves physical contact (e.g. boxing, football) can reduce the chances of concussion by changing the rules to minimise dangerous or aggressive contact.
dangers of a repeated concussion Regular readers of Bridge will know that acquiring a brain injury increases the likelihood (almost two fold) of acquiring a second brain injury. In a similar vein, acquiring a second concussion repeated before fully recovering from the first can lead to death or permanent brain injury. While not fully understood, it is theorised that the second concussion can impair the brain’s ability to control its blood supply, leading to deadly levels of blood pressure within the brain. It is critical for people to cease their sporting activity if there is a chance they have concussion. Image by Patrick J. Lynch, medical illustrator under Creative Commons Licence 2006
Sports-related concussion The human brain is so complex that we still have a long way to go in understanding brain injury. Through most of the 20th century it was believed that if there was no period of unconsciousness then there would be no lasting effects from a traumatic brain injury. Research then revealed that there can be lifelong effects from a mild brain injury even if the person remained conscious. Even more recent research is now confirming that brain injuries can occur with repeated impacts to the brain, even when they don’t result in a concussion (generally seen as the mildest form of injury to the brain). Increasingly we are aware that our brains are more fragile than previously thought. A fragile Brain? It has taken years to establish how fragile the brain is as it is very difficult to diagnose brain injury from repeated impacts not resulting in concussion (sub-concussive impacts). Many of the findings come from autopsies conducted on military personnel, footballers, boxers and other athletes. Studies on living subjects are confirming these findings (such as a report in the June 2012 issue of American Academy of Neurology) that sub-concussive impacts in contact sports is affecting the learning ability of US college students. New brain imaging techniques are revealing how the brain is injured from repeated mild traumas to the head. This is a major cause for concern when many young Australians grow up playing contact sports, especially when there are no
requirements to wear head protection for sports like football (unlike our American cousins). Permanent injury from concussion So what about actual concussion? The dangers of ongoing minor trauma to the head have been known for years in sports like boxing. The symptoms of Dementia pugilistica typically emerge over years, and include the typical symptoms of a brain injury and also the risk of Parkinsonism, tremors and unsteady gait. Sports such as football have come under increasing scrutiny. Three strikes and you’re out? A Neurosurgeon in a recent Four Corners report is so concerned by the growing evidence
for permanent brain injury from repeated concussions that he believes a “three strikes and you’re out” rule should apply to concussions. Currently there is no ruling on repeated concussions, but the three major football codes in Australia wisely insist that a player with concussion cannot finish the game. Synapse and other Brain Injury Associations across Australia aim to help educate and prevent such injuries occurring through the implementation of protective headgear in relevant sports. This will be a key theme in the BANGONABEANIE project for 2012.
Contact sports are the first we think about when it comes to concussion, but there are many activities such as skateboarding, horse riding and skiing where helmets are still not commonly used. 4 / BRIDGE MAGAZINE
Memory & learning after brain injury Memory is a complex function of the brain and it affects how you learn It is very common for your confidence to take a nose dive after a brain injury. Feeling confident is an important part of your rehabilitation process. These tips might prove useful for those blue days: • Use memory strategies • Accept help in some areas • Create order and routine in personal surroundings • Develop support with friends, support groups etc. • Overcome isolation by socialising with like-minded and supportive people • Develop goals with small steps which can be achieved over a reasonable time • Use self-affirmations and identify personal qualities • Recognise personal achievements and gains since the injury • When faced with a crisis, take time before making decisions • Develop a list of fun activities for the bad times. • Join a support group or online brain injury forum to meet others in your position.
Coping with the “new” person
A brain injury can bring about many changes to someone’s personality which can prove very difficult for their family and friends. Here are some tips that may help cope with the changes: • Take time out to look after yourself and recharge • Don’t dwell on the “old” person but get to know the “new” one • Read about the deficits caused by the brain injury to understand the issues involved • Go to a carers support group and talk about the difficulties • Help your loved one to set achievable goals and reach them • If memory is an issue take time to look through photo albums • Place emphasis on the strengths and abilities that remain • Consider counselling if major problems are being caused.
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Memory changes are very common even after a mild brain injury, often as the result of injury to the frontal and temporal lobes and the limbic system. Different kinds of Memory Working memory is the system that processes new information from the world around us – what we see, hear, touch, taste and smell. Working memory is considered a very temporary storage of information e.g. shopping lists, numbers, things we are told. Short-term memory is for day-to-day information, and often only last minutes, hours or days. Long-term memory lasts longer and reflects your ability to learn and store information such as knowledge or facts about yourself and the world and the physical skills you have learned (e.g. riding a bike). Long-term memory is often unaffected by brain injury. Problems you might notice after a brain injury include: • Difficulty learning and remembering new information or skills • Forgetting important details e.g. names,
dates, appointments • Forgetting to take medication • Forgetting what you have already said/done • Repeating yourself • Asking the same questions over and over • Forgetting to do things, or getting easily distracted onto other tasks or activities • Forgetting how to get to places, or difficulty finding your way around e.g. when driving, or in shopping centres • Forgetting how to do things e.g. cooking, fixing things • Difficulty following instructions. • Difficulty following the plot of a conversation, a book or a movie on TV. Coping with memory & learning difficulties Keep it simple Information that is too complex or too lengthy will be hard to remember: • Do one thing at a time • Break new information down into smaller pieces • Break tasks into smaller steps
• Have a routine or plan so you can keep on track with tasks and don’t forget to do things. Use memory aids Using all sorts of memory aids will help with remembering important tasks, activities, dates etc. Writing things down can often help memory as well. • Diary – used for important appointments, dates, addresses, phone numbers and to plan • Notebooks – used for writing down new information when you are out; good for shopping lists, or lists of things you need to do • Calendars – use these for getting a snapshot of the week or month ahead so you can plan for activities • Making lists – use these to keep on track when you have more than one thing to do and you want to be organised. Lists are great for shopping and other tasks • Corkboards and white boards – use these for putting important information where you can SEE it - great for bills, appointments, and other reminders • Computers and electronic gadgets – are great for storing lots of information, small electronic organisers can be taken with you and updated regularly. They can also be programmed to remind you about appointments, and to finish activities e.g. pay a bill. Repetition Repetition will help, as the more times you hear something, the more likely it is you will remember it. • Repeat information to yourself verbally, or write it down • Ask other people to repeat things too, especially if there is a lot of detail or new information • Practise a bus or train trip until it is very familiar to you. Keep things where you can see them • Try to put the things you use all the time (keys, wallet, phone) where you can see them e.g. on the kitchen bench, by the front door
• Put reminders in places where you will be likely to find them e.g. on the fridge, on the front door, or use a corkboard or whiteboard Everything should have a place • Organise household items so you can find them easily e.g. where to find the scissors • Have storage systems for paperwork and other important information e.g. a filing system with labels to separate information e.g. bills, tax, health. Drugs, alcohol & medication • Alcohol can directly affect new learning and memory, so if possible stop or reduce how much alcohol you drink • Drugs such as marijuana will directly affect new learning and memory, and ongoing use is likely to lead to significant impairments in memory function • Some medications for treatment of epilepsy or pain may change your alertness and ability to concentrate and attend to new information – talk to your doctor or pharmacist about this. Structure and routine Having an organised life can help take the load off memory and learning. When activities are routine, it is more likely you will remember them. Examples of this could be: • Taking medication at the same time every day • Having a routine for getting out of house and locking up • Shopping and bill paying on certain days • Putting your paperwork and bills in a filing system. This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with ABI and their families. Their mission is to assist people with ABI in Queensland, their families and carers to achieve an improved quality of life and community integration through increased independence, choice, opportunity and access to appropriate and responsive services. Ring ABIOS on 07 3406 2311 or email email@example.com
Memory strategies I am already using
Memory strategies I would like to try
People who have suffered a brain injury often find that friends disappear quickly. Some find it too difficult to cope with hospitals and rehabilitation phases, while others may have simply been ‘fair weather’ friends. In other cases, personality changes or challenging behaviours can drive friends away. The families caring for someone with a brain injury may find they lose their friends for similar reasons. Added to this can be the fact that a brain injury in the family can be so traumatic that there is little else you can focus on. Even the best of family friends may find it difficult to share your focus on an event that has changed your life so drastically. Often people are bitter at this desertion by friends who they thought would stick with them. Another issue for families can be the disbelief of friends. For example Sue’s friends simply don’t believe that her husband, Allen, has a raging temper, can no longer control his money and is self centred. They only see his charming witty side that he can still project in short public appearances. Sue is finding it difficult when her best friends are starting to believe she is making up stories about Allen for sympathy. In these situations you can either provide your friends with information about brain injury or remember your local Brain Injury Association is always available if you are close to breaking point. Sometimes getting things off your chest to someone who understands can be a great relief! Some final points worth considering are: • Look at establishing new friendships in a support group • Keep your appreciation of support from friends high while keeping your expectations low • Finding strategies for challenging behaviours to prevent social exclusion • Try to be understanding if friends ‘come back’ after the worst phase of hospital and recovery are over • Carers may need to focus on talking about ‘normal’ things with friends some of the time.
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If life throws you lemons, make lemonade A woman is like a tea bag. You only know how strong she is when you put her in hot water.” - Eleanor Roosevelt
In 2005 I was a healthy 24-year-old. I’d finished two university degrees, rock climbed around Thailand, backpacked through Europe, and played volleyball with the Australian squad. I worked full-time in the corporate world and lived a healthy lifestyle. I wasn’t considered ‘high-risk’ for a stroke. I was wrong. A rare strand of the streptococcus-A virus had a party in my body, but the party got out of control causing my brain to haemorrhage and for me to collapse at the Melbourne Airport. I was immediately rushed to hospital where tests and scans revealed the significant bleed in my brain as every one of my internal organs began to shut down. My family were called in Brisbane and told to come to Melbourne immediately as I wasn’t expected to live through the night. My lungs had collapsed and I clinically died twice, but was resuscitated. Specialists contemplated draining fluid from my brain to ease the pressure, but decided instead to let my body absorb the bleed naturally as my condition was too fragile for surgery. 7 / BRIDGE MAGAZINE
I spent the next three weeks in a coma and two months on life support. During this time I was having violent convulsions, apparently caused by the Acquired Brain Injury (ABI). Numerous blood transfusions, kidney dialysis and trips to the hyperbaric chamber were all a part of the intensive care unit (ICU) circus for my family and me. Fortunately for me though, I don’t remember a thing. For two months my wonderful family camped outside the ICU. The news was never good, and specialists said my condition was not improving at all. They would test for a brain signal in one week and if none was found my family would need to consider turning off my life support. That was the longest seven days for my family. To be honest there are still some days I doubt they’d find a brain signal before I have a strong morning coffee! When I came off life support I was transferred by air ambulance to Brisbane where more challenges began. All up, I spent over a year in hospital (the first time). My extremities had turned gangrenous,
and despite initial concerns that I could lose both legs and one arm, surgeons only had to amputate nine fingertips, all of my toes and one leg. By this time I was ‘healthy’ enough (infection free) for heart surgery. After the first year I returned home, however, it wasn’t long before I was back in hospital having one of my hips replaced. I celebrated my 25th and 26th birthdays in hospital but knew that I still had so much life to look forward to. The ongoing side-affects of my ABI ABI affects everyone differently, but for me vision impairment and fatigue have been the main struggles (and are often more challenging than my physical disabilities). Epilepsy, memory loss, poor concentration, speech difficulties and impaired coordination are also worse at different times. You can see my wheelchair, scars and amputated fingertips but you can’t see epilepsy, fatigue or vision impairment (I’m technically 25% blind). Unfortunately, many have mistaken my ‘invisible disabilities’ as rude, difficult or antisocial behaviour. My family, friends and I have been shocked and disgusted by the comments from seemingly intelligent adults who’ve said really stupid things like “Disability must be easy for you because you don’t look disabled”... Ummm! <insert expletives here>. Comments like this are
1999 - Rock climbing in Thailand
2005 - Lisa’s brother, David, helps her to brush her teeth during the lengthy hospital stay
the worst examples of people being ignorant of ‘invisible disabilities’ as some of these people actually worked in the disability sector. My rehabilitation is ongoing, and takes daily commitment and persistence. It has been just over seven years since my ABI, and I still discover myself regaining skills and abilities that I thought were lost. Returning to gainful, mentally stimulating work was really important to me. As a writer, I also faced challenges navigating a computer keyboard with my new hands (minus nine fingertips) and limited sight. I confronted walls of discrimination from employers who saw my disabilities before they saw my ability. My physical disabilities were frequently mistaken for intellectual disabilities which was immensely frustrating. I knew I was a long way off where I used to be and had a heap of challenges but my brain was injured not completely missing! In the end I decided I’d go back to study and complete a Diploma of Business Entrepreneurship and started my own business. I’d always thought about writing a book but it took an ABI for me to actually do it. I published my first non-fiction book in 2009 and it was short listed for a Publishers award. I was then asked to write a second book which is due for release later this year. I’m currently writing my third book and nearing completion of the manuscript. Illness took my life twice. Surgeons took my fingers, toes and leg. Years in and out of hospital and life in a wheelchair took a degree of independence. But nobody can take my passion for writing. I also do public speaking engagements. My speech has ‘bad days’ but I wasn’t going to let that hold me back from speaking out on issues that are important to me — like positive body image and disability awareness. Last year I was invited to attend a function at Parliament House in Canberra for the NDIS (National Disability Insurance Scheme). I remember being in the room, surrounded by MPs as the prime minister spoke. I realised that
I wouldn’t have had this fantastic opportunity if it were not for my ABI. What helped me recover (and still helps today) Gratitude and perspective. A brain injury might not seem like something to be grateful for but if you’re reading this (and have an ABI) then be grateful that you’ve retained the cognitive functioning to do so. During my recovery (in a Brisbane public hospital) Dad put it in perspective, reminding me of how lucky I was to just be alive and have clean water and food at my bedside – even if it was hospital food! Sure I have obstacles but they’re nothing compared to others living in challenging situations. Focus on what you can do and what you do have. Try to focus on all that you DO have in your life. Instead of thinking about the 25% of vision that I’ve lost I focus on the 75% of sight that I have left. I can’t use my legs but I can use my voice which is why I’m so proud to be an Ambassador for Synapse. I’m very fortunate to have the opportunity to stand up (metaphorically at least) for over 1.6 million Australians whose lives are also affected by ABI. Challenge yourself (safely). Reach for the stars – you might not touch them but at least you tried. I found I improved a little more every time I was placed in a new situation with new challenges. My recovery plateaued somewhat after a year in hospital, but rapidly improved again once I moved home and had to retrain my brain to perform simple new tasks.
Celebrate small achievements. Even though it might seem trivial at first, don’t forget to celebrate the small stuff! I’d captained the Queensland volleyball team to gold at the National titles but after ABI that meant nothing and my greatest personal achievement was just brushing my own teeth. Don’t be afraid to fail. I failed miserably the first time I tried to relearn basic tasks. More food ended up in my lap than in my mouth when I first started using cutlery by myself. But with patience and persistence it gets better! Because rock climbing was such a big part of my earlier life I approached my recovery in the same way. In rock climbing you climb then you fall . . . but then you climb a bit further and fall again. So this pattern of climbing and falling continues until you reach the top! ABI? – Attitude Beats It! Motivation and inspiration can be hard to find after a brain injury, but sometimes you have to be your own cheerleader. Family, friends and medical professionals all play an extremely important role in recovery but there are always going to be certain times and situations when it’s the person you see in the mirror who has to do the hard work and provide the motivation. ABI is a disability but there’s nothing more disabling than a bad attitude. No amount of bitterness or wallowing in self-pity will change what has happened to me. I can’t control the fact that I have an ABI but I can control how I deal with it.
lisa cox – author, advocate & synapse ambassador Having overcome tremendous personal health obstacles, Lisa Cox now shares her story with others, promoting gratitude, perspective diversity and acceptance. In 2010 Lisa published a book ‘Does my bum look big in this ad?’ for young people, based on her years of first-hand experience in the media industry and talks to school students about healthy body image. Lisa is also a passionate advocate for disability awareness and supports organisations like Youngcare and the Prince Charles Hospital Foundation. Lisa is also a Synapse Ambassador and will be working to increase awareness of Acquired Brain Injury. Visit http://lisa-cox.com to read more about Lisa’s inspiring story and work.
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Weâ€™re raising awareness of brain injury in Australia. How about you?
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The BANGONABEANIE Campaign encourages people to buy a beanie to show their support for Brain Injury Awareness Week. The profits from this campaign will go toward improving essential services for people living with an ABI, including support during the most crucial stage of recovery, the postinjury period. BANGONABEANIE is a fun, and more importantly, informative way to get our message out there – over 1.6 Million Australians (over 1 in 12) are affected by Acquired Brain Injury. The Blue Beanies are about Brain Injury Awareness (BIA) & BIA Week 13-19th August, 2012. The theme for this year’s Brain Injury Awareness Week is ‘Sports related Head Injury’, including concussion, which will be used to facilitate media engagement and discussion in general. Remember, the key message is still Brain Injury Awareness. With such a lack of awareness out there, the focus is to reinforce the high prevalence of Acquired Brain Injury (ABI), and the link between blue beanies and ABI. How you can help It’s vital we keep the beanie concept fun, bring the topic of brain injury out into the open and start a conversation. Keep messages simple and easy to understood. The strength of the campaign is the support we get from the community. Perhaps you can try: • Selling beanies and merchandise • Visiting http://bangonabeanie.com.au, encouraging others to do so, and visiting our Facebook and Twitter pages
• Social Networking – every ‘Like’ is important so keep Facebook and Twitter active with Likes, Shares, comments and photos • BangOnABarbie – have a barbeque, sell beanies and collect donations • Posters – put them up everywhere possible • Web banners - download and put them on your web site (free IT support available if required) • Forwarding media releases to local media, talking to friends and family and sharing the campaign material - it was designed to spread the word. • Fund raising – collect donations or direct people to our web site to donate • Contacting sponsors – provide them with campaign material and get them excited about BangOnABeanie • Wearing your beanie and t-shirt out-andabout - encourage others to do the same • Starting a conversation in the community
– the more we talk about it, the more understanding it creates. Important things to remember Our message is simple – show your support for those affected by ABI by wearing your beanie! Remember: • For the greatest impact use the campaign material – use social networks, upload photos, ‘Like’ and share info • Synapse will manage the official Facebook page, but we want as much interaction from other organisations and the public as possible. Need a Facebook page? Talk to us. • We want everyone promoting the campaign as much as possible so pass on campaign material, posters, and encourage people to hold BangOnABarbie events. For more information: Email: firstname.lastname@example.org
core messages we’d like people to get stuck in their head • It’s about Brain Injury Awareness • Buying a beanie shows you care (so please register your support) • Wear your Beanie during Brain Injury Awareness Week - 13th to 17th August 2012 • People who live with ABI are our family members, students, colleagues, and neighbours, they contribute to our communities — they are people, just like us • Share your personal beanie story on Facebook and show others they are not alone • Understand the facts about ABI • It’s OK to talk about brain injury. Let’s talk about it, and show support • Recovery from ABI is possible — with support from peers and family members, plus treatment and understanding, people can (and often do) get better! • You can help — by learning the facts about ABI and helping a friend get assistance.
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Minor head injury discharge advice for adults On returning home after a hospital visit for minor head injury it is important that, if possible, you are accompanied by a responsible adult. While unlikely, there is a small risk of developing complications, so if you experience any of the following symptoms in the next few days you should return to the Accident and Emergency department of your nearest hospital as soon as possible: • Loss of consciousness • New deafness in one or both ears • Loss of balance or problems walking • Any weakness in one or both arms or legs • Any vomiting • Clear fluid coming out of your ears or nose • Drowsiness when you would normally be wide awake • Increasing disorientation • Problems understanding or speaking • Blurred or double vision • Severe headache not relieved by painkillers such as paracetamol • Bleeding from one or both ears • Any fits (collapsing or passing out suddenly) • Inability to be woken Dos and Don’ts • DO make sure you stay within reach of a telephone and medical help in the next few days 11 / B R I D G E M A G A Z I N E
• DO have plenty of rest and avoid stressful situations • DO show this article to a friend or family member who can keep an eye on your condition • DO take painkillers such as paracetamol for headaches • DON’T stay at home alone for 48 hours after leaving hospital • DON’T drink alcohol until you feel better • DON’T take aspirin or sleeping tablets without consulting a doctor • DON’T return to work until you feel ready • DON’T play any contact sport for at least three weeks without consulting your doctor • DON’T return to driving until you feel you have recovered – if in doubt consult your doctor. While most people recover quickly you may experience some of the following symptoms over the next few days and weeks, which don’t require a return to hospital: • Headaches • Feelings of dizziness • Nausea • Sensitivity to light or noise • Sexual difficulties • Sleep disturbance
• Memory problems • Irritability • Restlessness • Impulsivity and self-control problems • Difficulties with concentration • Feeling depressed, tearful or anxious • Fatigue • Difficulties thinking and problem-solving. In most cases these symptoms will resolve themselves within two weeks. However, in some cases they may persist much longer. Try not to rush back into normal activities, as this may delay recovery. If you still have any symptoms after two weeks we suggest you see your GP and take this article with you. It may be possible to seek referral to a brain injury specialist such as a neurologist or neuropsychologist. This article is reproduced from www.headway.org.uk with the permission of Headway - the brain injury association. You can send an email to email@example.com to discuss any issues raised. Headway - the brain injury association is a charity in the United Kingdom offering support to people affected by brain injury through rehabilitation programmes, carer support, training, social re-integration, information, advocacy, community outreach and respite care. Visit the website for great resources available for free download..
Concussion in youth & children
Who needs to know the signs and symptoms of a concussion in children at school? The answer is simple – everybody does. A concussion is a mild brain injury. Whether a student is in primary or high school, it it is important to closely monitor the effects of a concussion and the recovery process. It’s not up to just the parents, physician or coach. Everyone who has contact with the youth can be part of the managing team in their neighbourhood. This includes coaches, athletic trainers, parents, GPs, teachers, school nurses and school psychologists. They all have a role in monitoring and helping the student’s recovery. Appearances can be deceptive A youth may have no visible signs of injury, but this does not mean that there has not been a concussion. The following changes are indicators that a youth may have sustained a concussion and should be examined: • vacant stare • easily distracted • difficulty answering questions • disorientation • slurred speech • lack of coordination • memory impairment or loss • highly emotional • any period of loss of consciousness. Many people assume that a blow to the head is not serious if the youth does not lose consciousness. There is often no loss of consciousness (LOC) when a young person has a concussion. If LOC occurs, it is often just seconds or minutes. It is important to note, though, that the brain can still be injured by concussion without LOC.
Help for the student athlete Many people can help a young person who is injured at home, at school, on the playground, during a game, or in a team sport. GP – It is very important for parents to always tell a child’s pediatrician or family doctor about any concussion that is suspected or identified, no matter how minor it may seem. The child’s doctor can advise on how to monitor a child’s recovery and determine when it is safe to resume activities. Following a doctor’s advice can help a child recover and prevent another injury. Parents – Parents know their child better than anyone. Any injury to a child’s head, face or jaw has the potential to be dangerous. Parents should talk with the doctor about how to monitor their child immediately after the concussion. It’s also important to always check with a physician before giving any medication to a child after a concussion. Parents are in the best position to closely watch their child for any signs of change including worsening headaches, weakness, numbness or decreased coordination, repeated vomiting, difficulty waking, unequal eye pupil size, convulsions or seizures, slurred speech, increased confusion, restlessness or agitation. Any of these changes require medical attention. Friends – They may be the first to notice that something just isn’t right with their friend. They may have seen their friend fall or be hit. The concussion may not have been diagnosed yet, but close friends may see changes that are signs of a concussion. Friends can help by telling parents, school nurses or athletic trainers about the changes they have noticed. Teachers – There are many ways that a concussion can affect a student in school. Difficulty concentrating, remembering new information or getting along with classmates are
just a few changes often seen after a concussion. Teachers can help the student during the recovery process by reducing assignments, building in rest periods, and giving more time to finish assignments or homework. School nurses – The school nurse can be a helpful and informative resource for both the student as well as parents, educational and athletic staff. By identifying and recording symptoms of a concussion in a student-athlete, the school nurse can monitor the child’s progress, identify problems and communicate with parents. Coaches – The coach is responsible for protecting the athlete’s health and safety whenever a concussion is suspected or has been diagnosed. Every coach should be aware of the signs and symptoms of concussion and guidelines for the student’s safe return to play. Many players do not report concussion symptoms, because they do not want to be removed from a game or practice. This places additional responsibility on coaches for awareness of any signs of concussion. Athletic trainer – The athletic trainer is a valuable resource for the student-athlete, parents, and all others involved in the school system. The athletic trainer has special training about concussion and guidelines for play. By insisting on safety first and participation second, the athletic trainer can communicate and coordinate information as the student’s recovery progresses. Conclusion There is nothing minor about a concussion. It affects the brain and must be monitored carefully. Everyone in the youth’s environment has an important role in the recognition of a concussion and in supporting recovery. Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This article has been reproduced with their permission from www.lapublishing.com/blog 12 / B R I D G E M A G A Z I N E
Understanding & managing depression It is a normal experience to feel down, sad and low at times, particularly when something bad or unpleasant has happened to us or those we care about. Usually these feelings resolve and fade away as other good things occur in our lives and time passes. For some of us, however, these feelings of sadness and low mood can be experienced in a more severe form and can continue for longer periods of time. This type of severe and long standing sadness and low mood is often referred to as depression. Depression is a clinical term that refers to a condition where severe and long-term sadness and low mood occur, and can be accompanied by symptoms such as weight loss or weight gain; difficulty sleeping or excessive sleeping; loss of interest in pleasurable and fun activities; poor attention, concentration and memory; irritability and restlessness; and re-occurring negative thoughts about yourself, you current situation and your future. Depression is a clinical disorder. It is a serious condition which does not resolve overnight but rather takes time to fix and requires specialised treatments. It is important to understand this and allow yourself time to recover and participate in appropriate treatment. Treatments for Depression There are two major forms of treatment for 13 / B R I D G E M A G A Z I N E
depression which can be used individually or in combination. The following section provides information about treatment regimes. It is important to note that treatments donâ€™t always work the same way for everyone. Please consult your physician to discuss what is right for you. Antidepressant medications One defining aspect of depression is a change in the balance of chemicals in the brain which impact on moods. Not having enough (or having too much) of some specific chemicals in our brain can contribute to feeling low, sad and fatigued. Antidepressant medications are drugs which assist in restoring the chemical balance in the brain to alleviate biological symptoms of depression. Unfortunately, antidepressant do not directly assist in changing thoughts and behaviours which also contribute to depression which is where psychological treatments can be very beneficial. Psychological treatments It is widely known that problems with thinking and behaviour are present in most depressed individuals. Psychological treatments for depression not only provide a supportive environment for us to share our difficulties but also aim to assist in providing skills and strategies to change thinking patterns and behaviours which contribute to depression. There are names given to some of the proven
types of psychological treatments such as cognitive therapy, cognitive behaviour therapy and interpersonal therapy. Your psychologist is skilled in treating depression, so donâ€™t hesitate to ask them if you have more questions.. Combination treatments Research has shown that often a combination of both antidepressant medication and psychological treatment can provide optimal benefits to individuals with depression. The antidepressant medication assists in changing the individuals mood state from negative to normal, whilst the psychological treatment provides support and skills and strategies to change thinking and behaviour and increase long-term coping skills and minimise relapse. Things You Can Do In Managing Depression Loss of interest in pleasurable and fun activities Problem: People who experience depression often find themselves not enjoying activities they previously enjoyed. Not only do they miss out on positive experiences by not participating in enjoyable activities, those around may feel affected by this too. Solutions: The following suggestions may provide some general guidelines for increasing the amount of pleasurable activity you experience.
Make a list of activities you find (or used to find) enjoyable. Make sure you write down as many activities as you can. Remember to list both very enjoyable activities and also those activities which are only marginally enjoyable. Plan schedules of activities each day to include enjoyable activities. Try to increase the amount of time each day available for positive activities. After an activity really think about the aspects of it which were enjoyable. Talk to other about activities they enjoy and reflect on positive experiences. Remember that during a depressive episode things may not seem as enjoyable as they were previously. Focus on the positive no matter how small and remember that as you recover the level of enjoyment you will receive will only increase. Changes in sleeping patterns Problem: Changes in sleeping patterns (both excessive sleeping and insomnia) are also common in individuals experiencing a depressive episode. Inappropriate sleeping patterns can increase difficulties with mood and make routine interpersonal communication and daily activities seem excessively difficult and frustrating. Solutions: Regular, healthy sleeping patterns are a critical part of recovery from depression. Listed below are a few key points to assist you in establishing healthy sleeping patterns. Make sure you get up at roughly the same time every morning, regardless of how tired you feel. Avoid sleeping during the day or taking naps in the early evening before bed time Reduce tea and coffee intake to a maximum of four cups per day and do not have any tea or coffee after 3 or 4 pm. When you are awake at night do not lie in bed trying to sleep for more than 30 minutes at a time. Get up and go to another room and engage in a relaxing activity such as reading, listening to music, or a relaxation exercise (see your psychologist for more information) until you feel sleepy – then return to bed and sleep. Worrying and negative thinking Problem: Worrying or excessive dwelling on minor past failings and excessive negative thoughts about yourself, your world and your future are negative thinking patterns people with depression often experience. Worrying and negative thinking are unhealthy in that they reduce a person’s ability to focus on recovery
and they facilitate the experience of unhealthy emotions and behaviour. Solutions: Changing negative thinking patterns and reducing worry is not as easy as it may seem. This is an area that people often require the assistance of a psychologist. Below are some helpful suggestions to assist you to begin learning to control worry and reduce negative thinking. When worrying about a problem find a piece of paper and write down exactly what the problem is. If there is more then one problem write down each one individually. Once you have written each problem down systematically go through a problem-solving exercise to address each one and examine all the possible outcomes (both positive and negative) and their likelihood. See your psychologist for more information and training in the use of problem-solving strategies. When dealing with negative thinking patterns take time to think about how realistic your negative thoughts are. Try to explore alternate thoughts and explanations for circumstances. Keep a record of thoughts and alternative, more helpful ways of thinking. Avoid excessively discussing negative thoughts and feelings. When discussing things with colleagues, family or friends try to focus on positive aspects of situations. Negative thinking and dwelling on negative topics will not help you feel good. Keep yourself busy and your mind focussed on tasks. Avoid unstructured time where your mind may wander and dwell on negative themes. Try to think positively. There are many things you can do to address the cognitive component of depression. Some of these include making a list of your skills, talents, and achievements; trying to identify the three most beautiful things in your environment; and reminiscing about a time when you were really happy, successful, or content. Keep a journal of your thoughts, identify negative and unhelpful thoughts, and try to correct them. Do not make any major life decisions, such as quitting your job, getting married or getting separated while depressed. Remember, you may not be seeing yourself, the world, or the future in an objective way when you are depressed. Irritability, agitation and fatigue Problem: Irritability, agitation and fatigue are common experiences among people with
depression. Sometimes people feel frustrated with their rate of recovery or the level of support available, and annoyed that they don’t feel like they have the energy to do anything anymore. Sometimes people find themselves getting easily upset with those around them. Irritability, agitation and fatigue are often compounded by changes in sleeping patterns and other symptoms associated with depression such as negative thinking. Solutions: Being irritable or agitated is a normal part of depression, and it is important that others around us who provide support are aware of this so that they can be more patient and understanding rather than annoyed and unsupportive. Below are some tips to help you deal with feelings of irritability and agitation. Make sure you take the time to educate and advise key support people (such as close friends, family and colleagues). Tell them what you are going through, and that if you appear somewhat irritable or agitated it is not because you are unhappy with them but rather because you are currently recovering from depression. Make sure you take the time to thank them for their support and provide any further feedback on how they can best continue support you. When you are feeling irritable or agitated stop and settle your self down. Ask yourself what is driving your emotions. If it is negative thinking then use strategies outlined previously to tackle negative thoughts. If you are tired then pace out your workload to allow for this. If you feel unmotivated, try and incorporate some enjoyable activities into your schedule. Practise regular relaxation activities and organise regular times to talk with a support person such as a psychologist about how you are coping and implementing new coping skills. Taking time out to relax regularly and communicate with supportive people will greatly reduce the impact of potentially irritating and frustrating experiences. Be as active as possible despite fatigue. Try to schedule activities to fill up the spare hours of the day. Activities may include exercise, social interaction, or even routine household chores. If activity seems impossible, try to force yourself to do three things each day – it could be getting out of bed, getting changed out of your pyjamas, and brushing your hair. Even the smallest amount of activity is better than no activity at all.
PSYCARE: CLINICAL & CORPORATE PSYCHOLOGY Psycare is a dynamic team of psychologists based in Brisbane, Queensland, providing corporate and clinical consulting services. Corporate services include leadership assessment, coaching and development; organisational health audits; team development; wellness programs; grievance investigations; policy review, education and training; & early intervention, employee assistance, mediation and debriefing. PsyCare Clinical & Community services include assessment, treatment, rehabilitation and support programs for adults, families, couples, teenagers and children across a range of common psychological problems. PsyCare works closely with private and GP referrals; worker’s compensation and CTP insurers; & disability, child and family organisations. • Tel: 07 3839 4400 • Fax: 07 3839 4455 • Email: firstname.lastname@example.org • Website: www.psycare.com.au 14 / B R I D G E M A G A Z I N E
Demystifying brain injury Synapse interviews L.B. about her quest to take the mystery out of the invisible disability In the previous issue of Bridge we looked at the inspirational story of L.B.’s recovery from a brain injury following a car accident. As part of her honours thesis at Griffith University, L.B. created, produced and hosted a two-part documentary called Demystifying Brain Injury broadcast on 31 Digital Television in 2011. She interviewed 11 guests from the areas of science, psychology, services and brain injury survivors about the many sides of the ABI issue, raising questions and offering answers. This formed the creative foundation for an inspirational ABI global documentary that L.B. is filming, producing and hosting for the next four years. It will cover a very lengthy schedule, and is an integral part of her PhD studies in a Doctor of Philosophy at Griffith University. L.B. will visit scientists, specialists, people with ABI, well-known figures and ABI lobbyists at their homes, hospitals and research centres in her ongoing quest to present ABI in the media in a new uplifting light. We spoke with her about both her past and upcoming documentaries. This is her story, in her own words. How did the idea come about for your first brain injury documentary Demystifying Brain Injury? 15 / B R I D G E M A G A Z I N E
I noticed when searching for brain injury programs on Australian TV that there really wasn’t anything major out there, or just a brief segment within a broader show about other things just to create impact, shock, whatever. I thought it was time to get out there and discuss this more openly, honestly, in a longer detailed format, within an interview series with many more guests from a wide range of areas that deal with brain injury – rather than just with the ‘one guest’ stock standard thing. What impact did it have on you and the people you interviewed? The experience was an eye opener. It was such a rich find – meeting all these courageous passionate people, like opening a can of worms, but instead of worms coming out, the sun did. Many light bulbs went off. Everyone had such amazing ideas to contribute, and with such zest. All the guests were incredibly knowledgeable and enthusiastic about everything from physiology, psychology and research right through to assessment, services and support. Plenty of carers ordered DVDs from the local show so they could gain a broader perspective on ABI, in terms of the scientific aspects as well as the social and emotional impacts.
My deepest wish is that if there’s just one person out there watching my TV work that has had a bang to their head recently, who hasn’t bothered to go to their GP to get checked out, who said no to scans in hospital, or who just ignored blurred vision and basically fobbed it off as a silly wee egg on their noggin, now knows it might be a mild Acquired Brain Injury. Many people go around undiagnosed as I did for so many years. A mild brain injury is very easy to overlook. It can present as other things. Plus you can appear perfectly okay on the outside, and there’s turmoil on the inside, but no one can see that, it’s an invisible invader. Another thing this program did was discourage people from being a right yob on the road, a daft bugger in pubs, and on the playing fields. I am pushing for people to wear their seat belts, wear their helmets, be more aware of themselves, and their loved ones. What are your thoughts about the lack of public awareness in Australia about brain injury, compared to the USA with its many ABI documentaries? Here, there is still a rather awkward resistance to bringing the subject of Acquired Brain Injury out into the open, especially in a broadcast
television situation. Maybe we don’t speak about ABI much in this country because Aussies are a laid back lot and we have this ‘she’ll be right, mate,’ mentality. There is this stigma attached that by admitting we might have had a bit of a bingle to our brains we’ll then be judged as an utter silly bugger – so we better keep it hidden. It’s not a conversation that regularly crops up at the pub or at the footy! Maybe the recent sad events with Molly Meldrum’s accident might assist in some way, because of who he is. It seems like there was a slight swell in positive ABI reportage due to him and his progress. I hope if all is well in regards to Molly, to interview him or his staff on my next doco. You focus on the inspiring side of people’s recovery. Do you view your own recovery in a positive light as well? I gathered quite a few new skills that I didn’t have before the ABI, before the crash. I suddenly got this amazing sense of freedom behind the wheel of a fast car. I focus incredibly, it’s like having a tunnel vision. I react extremely fast, and for many it is a challenge to go at speeds over 200 km/h but I do it without a problem. It calms me, which is funny, it soothes. After an ABI it is really astounding what people can suddenly pick up isn’t it? Some wake up speaking a different language, able to play a new instrument, and so on. Once my memory kicked back in and I could read and write again — out of the blue I was able to read an entire book in only a few hours — as in hundreds of pages. I could speed read at a phenomenal rate. My word lexicon went off the charts. I gained a photographic memory for the smallest details. I can write huge scripts and articles. I used to be a shy person and now I’m totally self-assured. I was improved in many ways. You interviewed scientists, health professionals and people from rehab and support service organisations. What are your impressions of them all? All the people I met were fantastic. The overall impression I got is that although the local services are run professionally and with such dedication, there isn’t enough of them,
here in Queensland, anyway. There needs to be more awareness, more services, greater funding! There are so many people out there with ABI, the actual stats are staggering. 1.6 million Australians are affected with this. 1 in 12 or something like that, correct me if I’m wrong there. When people come out of hospital there are not enough places to go to, not enough residential places to stay, not enough facilities. I Then again, I have found that Australia as a whole with ABI assessment and rehabilitation is becoming a world contender, that things are improving, and we have some truly incredible resources here to fall back on. ABI organisations throughout the world are now looking to us for answers, and I am extremely encouraged to be part of that shift. In terms of understanding what ABI is, how it affects people, how the media often gets it so wrong in depicting it, it is up to people like me who have experienced a mild brain injury and are otherwise unimpeded by it to get out there and do more documentaries like this and be unashamedly direct about raising awareness. Particularly when I am in the position too publicly anyway, in terms of journalism and academics being my profession, that I am a TV presenter and producer, that this is what I do – in a celebrity sense - ABI or no ABI. I hope to get this subject firmly fixed in the public’s minds (no pun intended) and hearts! LIKE TO KNOW MORE? Demystifying Brain Injury screened on 31 Digital Television in 2011, but there will be repeats in 2012; check your local TV guides or call 31 Digital for repeat screening dates on (07) 3010 7331) and to order copies. Like to learn more about L.B.’s upcoming ABI/broadcast media PhD research and next ABI documentary? Do you know anyone who has experienced ABI that has gone on to do amazing, inspiring, exciting, unique adventurous things and they may want to be part of this exciting project? Then email email@example.com or firstname.lastname@example.org or call her Griffith University Research HDR office on (07) 3735 3904.
about l.b. L.B. Wilshere-Cumming’s story is one of not letting a brain injury slow her down. She is a professional broadcast journalist, television presenter and published author with a number of degrees under her belt and is currently a PhD research student in ABI and media representation. L.B. has already produced a documentary called Demystifying Brain Injury in conjunction with 31 Digital Television, and she is now working on a new larger commercial ABI documentary that is slated to screen nationally on major networks. This future documentary will feature inspirational stories of people recovering from brain injuries, along with L.B.’s journey in meeting them. Visit L.B Wilshere-Cumming Productions at http://wilsherecummingproductions.angelfire.com for further information about her career, life, TV, book work and passion for race driving.
Disability in numbers
Percentage of Australians who reported having a disability in 2009.
Australians over 90 years of age who have a disability.
Australian women involved in a caring role, compared with 11% of men. The gender difference among carers was most pronounced for those aged 45 to 54 years, 16% of men and 23% of women.
Australians with severe limitation in the core activities of communication, mobility and self-care declined. This is down from 6.3% in 2003, mostly due to the reduced rates of asthma and heart disease among Australians in the past few years. AIHW 2010, Disability, Ageing and Carers, Australia: Summary of Findings, Canberra, Australian Bureau of Statistics, 2010
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Stress Stress is part of everyday life and a natural reaction in adjusting to major life changes.
Aside from major life adjustments, stress occurs in response to ongoing daily hassles such as traffic, noise or inconsiderate people. The body responds to stress with the ‘flight or fight’ response in the central and peripheral nervous system. This involves a series of chemical changes which prepare people for a stressful event. Imagine your body’s reaction to the sound of a loud siren late at night outside your home. During stressful events the body mobilises via 17 / B R I D G E M A G A Z I N E
the brain’s messages. Changes may include increased heart rate and blood pressure, sweating, dilated pupils and extra sensitive senses such as hearing and vision. While the ‘flight or fight’ response is vital for survival if it occurs too often (as a result of chronic stress) there can be negative effects such as reduced protection from disease and infection, hypertension, heart, liver and kidney conditions and psychological disorders.
Stress often worse after an ABI In the majority of cases people find it much harder to deal with stress after a brain injury. Coping with stress uses many different cognitive functions such as recognising the symptoms, identifying causes, formulating a coping strategy and maintaining control of emotions. A brain injury can dramatically affect both cognitve functioning and memory, resulting in limited ability to cope with the normal stresses of everyday life. Family members can find
this difficult to identify, and believe a person is simply whingeing, being overemotional or immature. A brain injury has been likened to having a couple of lanes closed down on a six lane highway. While the traffic is light there is little disruption to the normal flow. But once the traffic reaches a critical point those closed down lanes suddenly result in traffic at a standstill backing up for kilometres. This can be seen as a person often handling a light load of stress, conversation, noise or workload, but at a critical point no longer coping. Understanding and managing stress The first step you can take to reduce stress is to become aware of the major sources of stress that exist in your life. You can keep a stress awareness diary for a few weeks that lists the date, time, event, severity, symptoms, and coping strategies you used to ease the situation. The second step is to categorise different stressful situations as follows: Controllable – Uncontrollable Important – Unimportant This can help you to stand back from the situation in order to view it more clearly and objectively. Coping skills required These are awareness, acceptance, coping and action skills. Some skills may be more useful in certain situations. To illustrate these skills, let us use the example of a person who is stressed because they have an appointment for a neuropsychological assessment.
Awareness skills This is getting a clearer understanding of the situation and how it affects the person. Example: the person can find out what a neuropsychological assessment involves and the purpose of it. Acceptance skills Acknowledging the stress and being realistic about how it affects a person’s lifestyle e.g. what aspects are controllable/uncontrollable or important/unimportant. Example: Recognise that the assessment needs to be conducted and that it will probably be quite tiring and demanding. The person may not be able to control when and how long the assessment is but they can manage their thoughts and reactions to the assessment. Coping skills Prepare to cope with the stressful situation by learning various strategies. Identify what changes a person can make to control the situation and reduce stress levels. Example: Using Self-Talk to develop a constructive outlook towards the assessment. Action skills Actively making changes to counteract or reduce the level of stress. Try the strategies listed below and remember to constantly evaluate each one in different situations. This is an excerpt from our comprehensive publication, Acquired Brain Injury: The Facts. It is available free of charge within Australia by post, or download as a PDF from our website at www.synapse.org.au
some stress management strategies 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 in your mind 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’. Practise 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, focus on your breathing pattern. You need to identify whether you breathe mainly through the chest or through your stomach. Short, shallow and rapid breaths from the upper chest should be avoided. The aim is to breathe deeply and slowly through the nose. You should feel greater movement in the stomach than the chest as you inhale and exhale. Practise breathing exercises everyday. Learn to apply slow breathing as needed e.g. when feeling stressed, angry or anxious. Progressive muscle relaxation: Learn 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 and relax for 10 to 15 seconds. Time to master: one to two weeks, two 15 minute sessions per day.
Counselling for carers
Caring for a close family member or friend can be very demanding and draining. While many carers derive satisfaction from caring for their loved ones, it can also leave them feeling stressed, anxious, guilty and sometimes resentful and angry. Carers often feel overwhelmed with the endless responsibility of caring and they can become socially isolated as a consequence. Counselling can help to relieve the stress associated with caring. Many carers are put off by the word ‘counselling’ and are afraid to ask for help. Counselling is about talking with someone who can help to make a difference in your caring role and your life. Counselling may not change your circumstances, but it may help to think and react more positively within yourself and your caring role. Some carers are also reluctant to seek help because they don’t want their loved one to know that they are not coping. Many carers feel guilty and ashamed about the negative feelings that they sometimes harbour toward the person they care for. These are all normal responses to extremely difficult circumstances. Commonwealth Carer Resource Centres in all capital cities offer both telephone and face-to-face counselling which is focussed on the specific needs of carers, covering issues such as stress, coping skills, grief and loss, transition issues, emotional support and your health. For carers in rural and remote areas, telephone services or, in many areas, face-to- face counselling through a local service provider are available. Internet-based counselling will be available in some areas soon. These counselling services offer shortterm counselling (up to six sessions) by qualified, professional counsellors. Counselling sessions with your Commonwealth Carer Resource Centre are based on need, not the ability to pay. You can contact your nearest Commonwealth Carer Resource Centre on 1800 242 636* for to discuss counselling.
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Vocational aids & equipment In the workplace the appropriate set up of workstations is essential, particularly for workers who are seated for long periods of time. Correctly adjusted and positioned equipment is important for safe and efficient use of a computer.
Wrist & forearm supports
Angled work surface 19 / B R I D G E M A G A Z I N E
Computer Workstation Equipment Incorrectly set up workstations may lead to muscle strain and adds to the risk of developing musculoskeletal conditions such as Occupational Overuse Syndrome (also known as Repetitive Strain Injury or RSI). Sitting at a desk can also lead to poor posture, carpal tunnel syndrome and epicondylitis (tennis elbow). It is important to use good work pacing techniques and take breaks often, with aids such as wrist and forearm supports, monitor supports, angled work surfaces, document holders, anti-glare screens and footrests. Alternative keyboards Key guards are available to help prevent the wrong keys from being hit. The guard covers the keyboard, with a hole cut in it for each key, acting as a guide to the right key. Reduced size keyboards are compact versions of the standard keyboard, and may be beneficial for one-handed use. Enlarge keyboards allow the keys to be viewed more easily, and may provide easier access to the keys for users with reduced fine motor control and vision impairment.
Mouse alternatives A trackball mouse features a large ball on top of the device, which can be moved with the fingers or hand without having to move the entire device. A joystick mouse functions in the same way a s a games joystick. It can be useful for people that require a device with a steady base of support, or have difficulty with the precision required by a standard mouse pointer. Touch pads are a flat rectangular pad. Sliding a fingertip, or a stylus, across the pad moves the mouse pointer. Touch screens allow some mouse functions to be performed by touching, dragging or tapping the icon on the monitor. Workstation Ergonomics Ergonomic sitting posture When sitting at a workstation you should be in a comfortable working posture with your joints naturally aligned in neutral positions. Working with the body in a neutral position reduces the stress placed on muscles, tendons and bones. The following guidelines may assist when you attempt to maintain neutral body postures while working at the computer workstation: Hand, wrists and forearms are straight, in-line and roughly parallel to the floor. Head is level or bent slightly forward, forward facing, and balanced. Generally it is in-line with the body, and shoulders are relaxed and upper arms hang normally at the side of the body.
Elbows stay in close to the body and are bent between 90 and 120 degrees. Feet are fully supported on the floor or a footrest, while the back is fully supported with appropriate lumbar support when sitting vertical or leaning back slightly. Thighs and hips are supported by a well-padded seat and generally parallel to the floor. Knees are about the same height as the hips with the feet slightly forward. Computer monitor placement Your monitor should be positioned directly in front of you so that your head, neck and body face forwards. The top of the screen should be around eye level. Position the monitor at a comfortable distance where you can easily read the screen without leaning forwards or backwards in your seat. As a general guide, start by placing your monitor at arms length away. Rest breaks Completing computer-based activities for prolonged periods can cause strain, stress and even damage to the muscles, tendons and other soft tissues of the body. Maintaining static postures (such as looking at a computer screen) and highly repetitive activities (such as using a mouse or keyboard) can cause fatigue, wear and tear and even injury. Take regular rest breaks throughout the day to stand, move around and stretch. For example, walking to the printer or water fountain, making a phone call or doing some filing are activities which can give your muscles time to recover from computer work. Organise work tasks so that some non-computerrelated activities are included in your day. These activities use different muscles and also encourage body movement.
Workplace Seating In the workplace appropriate seating is essential, particularly for workers who are seated for a large proportion of the day. When selecting an office chair, the following key features should be considered to ensure that the chair meets the individual needs. A five point star base is recommended for stability, while seat width should be wide enough to support the hip width also allowing some movement. Seat depth should support the length of the thigh without contacting the back of the knee. Seat height should adjust sufficiently to enable the user to be positioned at a desk with hands, wrists, and forearms roughly parallel to the desk. Some customised office seating can customise heights for particularly tall or short users. Alternative Seating Saddle seats are designed to separate the legs and maintain the natural curvatures of the spine. The seat securely holds the pelvis in position, allowing the body to bend and move from the hips rather than the waist. Saddle seats are often used in work environments where free movement of the upper body is important. Kneel-sit chairs are designed to minimise strain on back, neck and shoulder muscles by distributing body weight between the seat and knee supports. Kneel-sit chairs have a variety of adjustments including seat height and angle, and knee rest height and angle. Sit-stand stools are designed to allow the user to perch on the chair, with the majority of weight distributed through the feet and a smaller proportion through the buttocks. .
Ideal ergonomic seating posture
This is an abridged version of Lifetec fact sheets. from their website. Visit www.lifetec.org.au to read the full versions.
organising your work station Frequent reaching and stretching can cause stress and strain on muscles and joints. When working at a computer workstation, it is best to keep frequently used items close at hand. To reduce stretching and reaching the equipment on your desk can be organised into zones as follows. Primary zone: 0-30cm: Keep item that you use frequently or for long periods in this zone. Items kept in this zone may include your keyboard, mouse, pens, notebook and telephone if used frequently. Secondary zone: 30-50cm: Keep items that you use occasionally or for short periods in this zone. Items kept in this zone may include your telephone, computer screen, document holder, stapler and other stationary items. Tertiary/outer zone: Keep items used infrequently in the remaining area of your desk.
LifeTec is a not-for-profit, non-government Queensland organisation providing professional information and advice on assistive technology. LifeTec assists a wide range of people who wish to remain independent in their homes for as long as possible, as well as family members, children and adults who are living with a disability or supporting a person with a disability. Services include individual consultations, free community talks, displays and interactive workshops for health professionals. These services are delivered by health professionals from our Brisbane or Townsville Centres, or throughout rural and remote Queensland as we visit each region during the year. Our health professionals are available six days a week (Monday to Saturday) to assist any caller or visitor. For more information contact 1300 885 886 (Queensland only), email email@example.com or visit www.lifetec.org.au
independent living centres in other states ACT SA VIC
Ph: 02 6205 1900 Website: www.health.act.gov.au/ilc Ph: 08 8266 5260 Website: www.disability.sa.gov.au Tel: 03 9362 6lll Website: wwwyooralla.com.au
NSW TAS WA
Ph: 02 9890 0940 Website: www.ilcnsw.asn.au Tel: 03 6334 5899 Website: www. ilctas. asn. au Tel:08 93Bl 0600 Website: www.ilc.com.au 20 / B R I D G E M A G A Z I N E
Socrates said the unexamined life is not worth living. That may be something of an overstatement but he makes a good point — self-awareness is crucial to a meaningful life and interaction with others. Impaired self-awareness is a common outcome after a brain injury. While in more severe cases a person may have no idea the injury has affected them at all, I fell into the other category where I did retain some capacity for self-awareness. Others who have acquired a “mild” brain injury have commented that the effects are still anything but mild. While I was able to continue studying and then working after my injury, I had trouble getting along with people as I made inappropriate jokes or comments. While I could see this hurt some and pushed others way, I conveniently blamed them instead of myself. With hindsight I now cringe at the social gaffes I made over the years, as I believed my social skills were unaffected and used any coping mechanism to support this misguided belief. Overestimating abilities Apart from being unable to accurately assess one’s own abilities, impaired self-awareness can also lead to overestimating one’s abilities. For years I believed I was very skilled and experienced in computer programming. At university I felt I was a cut above the other students. This attitude continued into my jobs but lack of short-term memory, inability to focus for long, and poor attention to detail led to mistakes that resulted in constant calls into the supervisor’s office. Once again I used coping mechanisms to support my belief that I was actually a great programmer. Through a string of jobs I believed 21 / B R I D G E M A G A Z I N E
the bosses were obsessive-compulsive, simply had it in for me, or were playing favourites with the other staff. To avoid blaming myself I would leave the job before getting sacked due to this supposed unfair treatment. The same was happening in my social life. I believed I was an open, caring person with a great sense of humour and personality. But in retrospect I can see a frequently guarded me, self-centred and pushing others away with strange behaviour and comments that I saw as part of a ‘sparkling personality’. Tips for families So what can families and partners do to help someone with impaired self-awareness? In severe cases this must be difficult, as no amount of reasoning will help. I can only speak of my case, in which I had enough cognitive capacity to gradually accept the problems I had. Knowing that you are loved and accepted provides an environment where it is easier to admit you have a problem. My family had a lot of tolerance, as they suspected my injury was causing these problems. However they joined in my denial and never once said the problems could be from the injury. I wonder if my battle to become self-aware would have started sooner by being gently confronted by family members. It would not have been pleasant for them. I would have felt deeply hurt if they suggested my latest job fiasco may have been my fault. I would have felt implied criticism if brain injury magazines were suddenly left lying around the house. But having access to information and getting a dose of ‘reality therapy’ at some point would have been a start.
In my situation the realisation emerged as I was confronted with 15 years of leaving jobs, poor relationships, difficulty making friends, and a growing sense I could not blame everyone and everything else for the problems I was facing. So perhaps families should at times let their loved one make mistakes which they may eventually learn from, albeit at a much slower rate than an uninjured person. The examined life worth living Once I was aware of my cognitive deficits there was the painful process of accepting this and making adjustments. With employment I accepted I would never be a ‘professional’ and took a less well paid job with less demands on my struggling brain. Socially I try to think before I speak nowadays, and when I can see someone reacting negatively to me I now look for how I may have caused this, rather than blaming them. The most important thing has been accepting I am not perfect, and have problems like everyone else. The crucial thing is to acknowledge this, then set about correcting them as much as possible. I’d encourage anyone who has acquired a brain injury to examine their life and see if they could be facing problems caused by impaired self-awareness. Burying your head in the sand like an ostrich does not lead to a meaningful life, and realising you actually have a problem is at least half the battle in getting it sorted. The examined life is worth living, especially if you can then hold down a job, get along with your partner and family, and stop driving people away. by S.D.
In my line of work I talk to a lot of people who have survived a brain injury. Often those with a more severe injury have lost some degree of self-awareness and don’t realise the impact they have on others. When their families react negatively to their angry outbursts, they may think it is the family’s fault for getting upset. If a friend is hurt by an impulsive critical comment they say their friend is being overly sensitive. When they are sacked for repeated mistakes in the workplace then the employer was just being vindictive. When a survivor has retained their selfawareness they may be less affected, yet struggle more with depression and stress. They are in the unfortunate position of knowing who they used to be, what they have lost, and they will not be able to regain so much of their former life.
The determined ones apply themselves diligently to learning the techniques that will compensate — memory strategies, anger management, stress relief, thinking before acting. But a couple of years later they often hit a rut when they realise these strategies will only take them so far, and this is ‘as good as it gets’. In a sense, this can be the hardest part of the recovery for those who are self-aware. The brain’s limited ability to heal itself has occurred. The strategies have been learned. Now they need to accept and appreciate their new identity, a tough job if the new person is often tired, angry, depressed and lethargic. But it is possible. Those I speak to who have managed this transition have some things in common. They choose to put a positive spin on their troubles. Their limited energy means they have learned
to slow down and savour life, and their own struggles mean they can empathise more with others in pain. They often feel they have become better people in their struggle, and pass on what they have learned by writing articles or helping to run a support group. Most importantly, they have learned to move on. After grieving over their losses they become proactive about what the new person can do, such as volunteer work, new crafts or hobbies, linking up with survivors to make new friends. The final part of recovery is making what can be the most difficult transition — changing the way we think, so that the glass is always half full, and problems are simply opportunities in disguise. by D.Shepparton
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Impact on carers The burden on family members and carers is often forgotten when looking at the impact of a brain injury
Caring for a person with a disability is one of the most difficult challenges that can confront a family, especially for those providing direct care. Carers often feel that their life is not their own, or as one carer stated, it’s like “not having a life at all”. There may be little time to pursue their own interests and social life. The workload increases while at the same time there is reduced support from the injured partner. Carers often become their own advocates, and even act as case managers because of scarce funding and rehabilitation services. Personality & behavioural changes Families may be confronted with what appears as childlike behaviour, self-centredness, tactlessness, reduced emotional sensitivity and lack of gratitude. A brain injury can lead to impulsivity, verbal and physical aggression, increased/decreased libido, financial irresponsibility, alcohol and drug abuse, poor frustration and stress tolerance, impatience, restlessness, and a lack of mental flexibility. Common emotional difficulties such as depression and anxiety may lead to challenging behaviours such as withdrawal and avoidance. Increased dependency, which may be related to emotional problems, may also lead to increasing demands for attention from caregivers. When self-awareness has been affected, this places further stress on family as the loved one may refuse to believe they are acting inappropriately, and respond angrily to feedback about their behaviour. Lack of understanding People who are somewhat distanced from the person with the injury often have little
understanding of what the family is going through. The person with the brain injury may be able to act ‘normally’ for short periods in front of visitors or publicly, so that many won’t believe the difficult home situation as described by the family. In fact, friends or members of the extended family may make judgements about how a person cares for their relative, rather than offer support. Emotions All carers respond to the demands of caring for their loved one in their own way, with responses such as feeling guilty, overwhelmed, confused, numb, resentful, isolated, fearful, angry or shocked. There are no right or wrong feelings. These feelings are a natural and normal reaction to caring. Family members also experience grief, often feeling they have lost their loved one but being unable to say goodbye. For some, the caring duties have overwhelmed their life to the point they feel they have also lost their former lifestyle, and now all they do revolves purely around the person with the injury. Stress Stress itself is not a negative phenomenon. In fact, we need some stress in our lives to feel motivated, a sense of achievement and stimulation. It is typically the day-to-day stresses which take a greater toll on a person’s physical and mental health because people are less aware of the cumulative effects. Physical signs of stress may include a lowered immune system, breathing difficulties, fatigue, sleep disturbance and muscular tension. Carers may also find themselves feeling out of touch with reality, forgetful, not looking after themselves, crying easily and not eating properly.
Looking after yourself Carers need to maintain their health and wellbeing to provide the best frame of mind and ability to function as a carer. Things to keep in mind include: • Maintain your health • Involve your family and friends • Work through feelings of loss and grief • Counselling • Join a support group • A diary to express your feelings and reflect on the progress made • Everyone needs “me” time so pamper yourself • Make full use of respite care to get a break. Statistics & diversity of carers • 350,000 Australians under 25 years of age provide care to a family member who has a disability, or a mental/chronic illness, and 170,000 carers are under the age of 18 (ABS, 2005) • 454,000 carers are over the age of 65 (ABS, 2004) • Nearly 2 million carers of prime working age (15-64) (ABS, 2004) • 31,600 Indigenous carers are over the age of 15 (ABS, 2008) • 620,000 of Australia’s carers were born outside Australia, with 366,700 born in other than main English-speaking countries. (ABS, 2003) . Visit our website at www.synapse.org.au for a wide range of fact sheets for carers. Contact the Brain Injury Association in your State (see page 2) for carer groups and respite care options in your area. Visit www.carersaustralia.com.au to find the Carers association in your State.
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Headaches A persistent headache is one of the most common symptoms of concusssion
Pain is a frequent symptom after a brain injury, although its persistence is usually not related to the severity of injury. In some cases, particularly severe brain injury, surgical intervention may be required to relieve pressure upon nerves or within the skull. Appropriate clinical examination and diagnostic tests are needed to assess the form of treatment required. Causes of headaches The brain itself is not a source of pain. Headaches arise from problems with a number of different structures both inside and outside the head. Those inside the head can be the dura, the venous sinuses, blood vessels and cranial nerves. Those outside the head can be the skin, muscles, nerves, arteries, joint capsules, cavities within the head, nerves and the periosteum. A post-traumatic headache is only a symptom of an underlying disorder. Often a doctor may make this diagnosis, and no further investigation is made of the problems causing the pain. The headache may be treated as a neurovascular or migraine headache, when the great majority are not primarily migraine-type problems. There are different types of injuries that may create the pain generators of headache. Ideally your doctor should ask you questions 25 / B R I D G E M A G A Z I N E
about the injury. Major types of headaches The major types of headaches following trauma include musculoskeletal headache, tension-type headache and neurovascular (e.g. migraine) headache. Other rare causes of headache including seizure disorders and pneumocephalus (air in the head). Musculoskeletal headache is the most common type, and also the most overlooked. There can be musculoskeletal pain from the neck and structures in the head — a very common cause of this is whip lash injuries. These headaches often worsen with stooping, bending or exertion and may be associated with dizziness, sensitivity to light, sensitivity to sound and even imbalance. Manipulative therapy can be effective to assist in resetting bony structures. Other treatment may focus on strengthening weak spinal musculature, improvement of posture, anti-inflammatory medications and muscle relaxants, or the use of splints. Cervical Sympathetic Nerve Syndrome is, unfortunately, one instance in where headaches resulting from whiplash often cannot be ‘cured’. This syndrome occurs when the cervical spinal column — the length of spinal column in
the neck itself — is damaged. Symptoms can include (apart from a headache) uncontrollable spasms over the body, painful pins and needles all over the body, vertigo, facial pain, sinus congestion, fatigue, and more. This condition has also been known as Barre-Lieou Syndrome, after the doctors who independently discovered it. It is possible to treat this condition if there is only pressure upon the nerves but no actual damage to the nerves, it is vital that treatment is administered within 72 hours of the injury or permanent damage will result. Tension headaches are reported by most people to feel like a diffuse vice-like pressure throughout the head. An attack can last from 30 minutes to a week. Tension type headache may be chronic or episodic depending on frequency. There appear to be two types - one with migraine features fairly responsive to antimigraine medications, the other without such features. Neuralgic Pain Syndrome tends to occur when large nerves in the scalp are injured following trauma. This type of pain tends to be a shooting, stabbing type in the front and side of the head, sometimes with pain around or behind the eye.
scanning of the brain, X-rays and magnetic resonance angiography. Other types of pain Apart from headaches, there are numerous other sources of potential pain after a brain injury, such as abscesses, skin sores, cervical or spine injuries, fractures, heterotopic ossification (bony overgrowth), kidney stones, bladder infections, spasticity and constipation. There are two kinds of pain—acute and chronic. Acute pain is relatively short in duration. It has a readily seen cause and reduces with treatment. On the other hand, chronic pain lasts beyond the expected duration and it may continue although there is physical healing of the body region involved.
Migraine headache can last from four hours to three days. They have perhaps the clearest diagnosis of any of the categories of headache, using the acronym POUNDing: Pulsating headache for between 4 and 72 hours, Unilateral (one-sided), Nauseating and Disabling. Treatment should include reduction of triggers such as stress, foods that may elicit an allergic reaction, sleep inconsistency and other allergies. Hormonal fluxes can also cause migraines, and hormone replacement therapy has been effective at controlling migraines in many cases. The most effective control is often awareness – people who are susceptible to migraines often have an “aura” that signals the approach of a migraine, and may be able to prevent it by immediately stopping stressful activities and/or taking pain-killers. Appropriate medication could include tryptamines, ergotamine or corticosteroids. Relaxation training and biofeedback also should be considered. Newer techniques including the use of botulinum toxin injection into pericranial musculature can also be looked at. It is important to speak with your doctor before considering these options. There are many other types of headaches which can be diagnosed with tests such as MRI
Pain and rehabilitation The difficulties a person with brain injury faces can be even greater when pain is involved. The pain may be so intense and bothersome that the person withdraws from work, family and social activities. Pain may prevent them from attempting to return to everyday activities. This not only serves to lengthen significantly the time before returning to activities, but it also may contribute to hesitancy and reduced self-confidence when later attempting to resume activities. In contrast to people with mild brain injury, people with moderate to severe brain injury may deny or minimise the effects of their deficits. For these people, pain may reduce both awareness of their deficits and their incentive to work on improving these deficits by causing them to focus too much on their pain. Medication Pain management in brain injury is often difficult as medications may work against recovery. Many painkillers work against the re-emergence of the person’s mental and physical systems. Later, narcotics can be a problem because of their potential for substance abuse and their negative side effect on the ability think clearly. Anti-inflammatory agents are appropriate for musculoskeletal pain, though doctors must stay alert for possible gastric problems. Patients with brain injury and spinal cord injury tend to have high acid content in the stomach and are susceptible to stomach ulcers which can be increased by these agents. Antidepressants can be effective in controlling headache and nerve pain. These are not sedating except in high doses, and don’t depress the respiratory cycle. Always consult your doctor before undergoing any treatment, however, as it may not be appropriate for your situation. This is an excerpt from our comprehensive publication, Acquired Brain Injury: The Facts. It is available free of charge within Australia by post, or download as a PDF from our website at www.synapse.org.au
Boxing headgear not so protective
A new study published in the Journal of Neurosurgery (May 2012 Vol. 116) indicates that while headgear does reduce the chances of acquiring a brain injury, it does so only for certain types of impact. The study found that the padding of the headgear did reduce the effects of linear impacts, but had little to no effect on other types of impact. Even so, the risk of brain injury from linear impacts was significant despite wearing headgear. What about rotational forces? A hook punch results in rotational forces that can cause a brain injury, and headgear does not provide protection against this type of trauma. The types of fighting covered included bare hand–bare head, boxing glove–bare head, and boxing glove– headgear. The combination of both headgear and boxing gloves showed the greatest reduction in the incidence of brain injury. The conclusion? More work is required in developing improved protective padding that will minimise the trauma of linear and rotational impacts.
Better brain imaging
New technology in brain imaging has made great inroads into more precise diagnosis of Acquired Brain Injury. High Definition Fibre Tracking (HDFT) promises even better results shown in an article published this May in the Journal of Neurosurgery (Vol. 116). Current imaging methods generally don’t give very detailed information about the location of axonal injury, severity of injury, or expected recovery. This new imaging method should reduce the number of undiagnosed brain injuries, as well as provide information for families on the degree of injury and likelihood of recovery. You can consult your doctor, Neurologist, or read the article in the Journal of Neurosurgery for more information on this imaging technique. It is important to note that you may not need the image this technology provides, so it is important to consult your physician.
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Recreational & social options
Positive ways to manage behaviour
One of the most frustrating aspects of an Acquired Brain Injury (ABI) is that it can leave you at home with little social contact, support or activity – all the things that make life worthwhile. The following are suggestions for getting more out of life. It is suggested that you check with your rehabilitation specialists or family to get a realistic idea of your capabilities and limitations at this stage of your recovery. A common problem after a brain injury is feeling you have recovered more than you actually have. TAFE colleges often run cheap short courses which cover a wide range of fun activities such as art and crafts, boating, and job skills computers, cooking, languages, relaxation interior decoration, photography, sports and creative writing. Get details by ringing your local TAFE college. Owing to the lack of funding for ABI there are no specific community services offering recreation programmes but your local Brain Injury Association should be able to refer you to those that may be suitable. For many work is an integral part of self-esteem and this can be a contributing factor to the depression that is common after a brain injury. Most States have volunteer work organisations covering a wide range of volunteer work available which can be an excellent way to develop confidence again and prepare for a return to work in the future. For some, studying during their recovery may be very constructive. Once again you will need an accurate assessment of your abilities to make sure you can cope with the cognitive demands of study. Most educational institutions should have a Disabilities Officer who can help provide you with support through your course. An unfortunate aspect of ABI may be that you find old friends are lost and you need to make new ones when you may feel least able to. If you know your way around a computer you can link up with others around the world and share experiences over the internet. An example is www.braininjurychat.org which has chat rooms, message boards, personal stories and chances to link up with penpals worldwide. Or look for support groups in your area and meet face-to-face.
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To prevent and manage behaviour changes in a person after an acquired brain injury, it can be effective to provide positive support. There are no strategies that are guaranteed to eliminate or stop behaviour problems altogether as behaviour may be changed as a result of damage to the brain. Understand the causes of behaviour Get information about the brain injury and the effect the injury has had on the person’s behaviour. Become aware of any specific behaviour problems or changes, and any specific causes or triggers for behaviour: • Their personality style e.g. always had a bad temper • Habits, preferences and difficulty making adjustments. • Social and communication skills that may be reduced • Damage to areas of the brain that can directly cause behaviour problems e.g. the frontal lobes • Difficulty coping or adjusting to disability e.g. frustration, anger. • Reduced insight and self-awareness of
behaviour as the result of brain injury • Social factors and stresses that impact on behaviour – inability to work, drive, live independently, changes in relationships, physical functioning, leisure and social activities • Medical factors – medication, pain, fatigue, or headaches can cause or worsen behaviour • Relationship issues – losses or conflict with others may affect behaviour. • Environmental factors – noise, too much activity and living situation can also affect behaviour. Positive choices People will behave better if they have meaningful daily activities, experiences and choices: • Plan for successes and achievements to build confidence. • Focus on increasing the person’s self-worth, confidence and pride in themselves. • Activities that are fun and interesting will be more motivating • Focus on abilities and strengths.
Have realistic expectations Have a good understanding of the person’s strengths and areas of weakness. Make sure you compensate for any cognitive problems they may have: • Attention and concentration • Memory and learning • Reasoning and problem solving • Planning and organization • Understanding • Communication and social skills Understand what can and can’t be changed, then set tasks and goals that are within the person’s ability – not too easy, not too hard. Don’t expect more from the person than is possible – unrealistic demands create stress and stress worsens behaviour. Be realistic with yourself – you can’t do everything or know everything. Ask for help when you need it. Have a routine and provide structure Have a consistent routine for daily activities and tasks, and let the person know of any changes that are coming up – plan ahead. Having structure is important because it reduces the demands on cognitive and memory function. The more structure, the more organised a person’s life will be. Set clear limits Have clear rules and limits about what is expected (in terms of behaviour) of the person and of you – what you can do, and what you can’t do. Talk about the way things might work and set limits early. Set the rules or limits clearly – talk about them, write them down. Review and repeat the rules when you need to. Don’t make rules or set limits that you can’t stick to, and stick to the rules you do set. Be clear about your role/job early – what you do, what you don’t do. Let the person know what is expected of them (what behaviour is okay, what behaviour is not okay) and why. Don’t just impose inflexible rules. Improve communication Listen to the person, and explain what you are doing and why. Get to know their likes and dislikes, provide support so they can set and achieve their own goals and dreams. Find topics and activities that interest and motivate. Give the person as many choices as you can – this encourages independence and a sense of control. Take into account any difficulties the person may have with understanding what you expect of them. Give and accept feedback Feedback should be clear, direct, and immediate. A person can’t change if they don’t know what the problem is. Feedback should not be critical or punishing.
Give positive feedback and encouragement – people learn better when they know they have done well, and when they feel supported. Positive feedback can build a relationship – practise giving compliments, and notice positives about the person and their behaviour. Admit when you have made a mistake – apologies go a long way to building bridges. Stay calm Keep calm and model the behaviour you expect from the person with brain injury – if you can’t stay calm, why should they? Angry or irritable behaviour from you will likely produce angry or irritable behaviour in someone else. Don’t take what the person says or does personally – it isn’t just about you. Check your own behaviour – be aware of the connection between your mood and behaviour, and how that affects other people around you, including the person with a brain injury. Think about: • What you say • Your tone of voice • Loudness of your voice • Body language • Facial expression • How you feel • What you are thinking. Be respectful Treat the person like an adult in the way you speak to them, the way you give choices, and in your expectations about behaviour. Involve the person in decision making – most people don’t like being bossed around, or being told what to do. Talk about their options and alternatives, and then let them make real choices for themselves wherever possible. Find out what they like and dislike – don’t push your own ideas or preferences. Be polite, even when the person is rude to you. Redirect and shift focus Ignore behaviours you know are unlikely to change e.g. swearing, gestures, facial reactions – carry on as if these behaviours are not there. Redirect or distract the person to another topic or activity – make suggestions, direct the person’s attention elsewhere, or try something different – be creative! Use a sense of humour to break the tension and redirect the conversation onto something different. Use brief periods of time away from an activity, plans breaks and change activities. Have a few different ideas “up your sleeve” e.g. a deck of cards, a new activity, the newspaper. Wait until things calm down and try again later. This article is reprinted with permission from the ABIOS fact sheets available at www.health.qld.gov.au/abios/ ABIOS is a specialist community-based rehabilitation service to enhance the service system for people with ABI and their families. Ring ABIOS on 07 3406 2311 or email firstname.lastname@example.org
Should I drink?
Continuing use of alcohol or other drugs after a brain injury often creates further difficulties with alertness, memory, problem-solving and controlling behaviour and emotions. People who used to drink as a coping strategy for stress or during social interaction are even more likely to do so following a brain injury. Others may begin drinking heavily post-injury as a means of coping with the grief, stress and social isolation that they experience. Drinking after a brain injury can have a number of implications. First, alcohol may interact with prescription medications and cause serious complications. Second ,alcohol has a negative effects on the ability to control behaviour, emotions and thinking when these areas are often already difficult after the injury. Third, heavy chronic drinking can gradually lead to further brain injury as alcohol is a toxin in sufficient doses. Studies suggest that even ‘normal’ amounts of alcohol after an injury can cause further brain complications with poor neurological outcomes as indicated by brain scans, performance on neuropsychological tests and increased behavioural problems. Many specialists recommend that people abstain from alcohol for at least one year after their injury (if not permanently). If people decide to drink anyway, they should only drink a very small amount until they become aware of how alcohol now affects them and learn to recognise their personal limit, or the level that may be consumed without any risks or negative consequences. It may be beneficial to ask a close friend or family member to provide tactful feedback. For safety considerations people are encouraged to ask their doctor for advice on alcohol. People may require an intervention or programme from alcohol and drug support services. In making a decision on whether to keep drinking or using recreational drugs, consider the following points: • Using alcohol or other drugs will dampen recovery • A lack of coordination will become worse • Problems with impulsivity, concentration and memory can be exacerbated • After a brain injury, alcohol and other drugs have more powerful effects • Depression will be worsened • Alcohol and other drugs may cause seizures.
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Waking up Paul Gianni explains why waking from a coma is different from the way it happens on tv
The average human brain is 78% water and comprises 2% of total body weight. The average number of neurons in the brain is 100 billion. A comatose person will not wake, blink a couple times then suddenly bolt upright in their bed and ask, “Was I in a coma?” The state of being in a coma is not a black-and white-issue. Please allow me to use myself as an example. After first being admitted to the intensive care unit, I was unable to respond to verbal commands. In fact, I only lay in bed breathing and snoring, unresponsive to everything around me. After several weeks, with my eyes still closed and my status still considered comatose, I was able to make a fist at my sister’s request. Interestingly, though she and I frequently had our differences, she was the only one for whom I would do it. Even then, my motions were at a minimum and only performed as requested. My reaction to actually do what was asked seemed to take an unusually long time to the ordinary person. The doctors explained to my family that my brain was injured, and the time it takes for the average person to process information would now take me considerably longer because of the injury. Regaining consciousness was a slow, arduous process that took a few weeks. Since I had absolutely no recollection of any life before that immediate moment, life to me was just beginning for the first time. It was as if I was being born at the age of 22. But I was unaware of my age then, and still have difficulty remembering it today. Just as a newborn child would have to do, I had to relearn to tie my shoes, walk, talk, read, write, eat with silverware, etc. Life was exciting for me, just having been born. I was suddenly awakened to all the sights that accompanied the sounds I had heard while I was unable to open my eyes. Despite the excitement, many of the therapies were very frustrating because I would try to do simple things, but my body just wouldn’t cooperate. Also, I found the therapies
a little embarrassing. I knew I was a grown man, yet I was unable to complete simple tasks. After a little while, my memory was coming back slowly. I could remember some of the things I had done, but I could not remember how I had done them. I was irritated and confused with the fact that even though I had seen pictures of myself doing certain things, I could not do them properly. Then, the doctors and therapists explained to my family and me that though certain parts of my brain may recall participating in activities, other parts of my brain necessary to actually do the action were damaged and must be retrained. Not all people remain the same after a brain injury. They may have totally new likes and dislikes, different styles of dress and new modes of speech. Regardless, the important thing to remember is that the person recovering is the person you love or are. If you are a spouse or relative, keep in mind that the survivor has been through an extraordinary ordeal that may appear to be minor to you – but, I assure you, it had a profound impact on your loved one. Tips on communicating while a person is becoming more responsive and aware of people and surroundings?: • Keep things simple • Give assurance that the person is safe • Tell the person who you are and who is with you • Orient the person to time by saying if is morning, afternoon or evening • Say the day of the week • Post a calendar and mark off each passing day • Avoid arguing • Avoid asking questions • Bring in a favorite book, picture, music, or blanket. Lash and Associates Publishing/Training Inc. specialises in information and books about brain injury, blast injury, PTSD and concussion. This story has been reproduced with their permission from www.lapublishing.com/blog
The brain of the great physicist Albert Einstein weighed 1.23 kg which is actually below the average brain weight of 1.4 kg (and well below the brain of an elephant at 6 kg). Written about 1,700 B.C., the Edwin Smith surgical papyrus contains the first recorded use of the word “brain.” The human brain has 100 trillion synaptic connections. A jellyfish has no brain. After age 30, the brain shrinks 0.25% in mass each year. Roman emperor Elagabalus (3rd Century) was served 600 ostrich brains at a single meal. Your total number of brain cells begins decreasing at the age of 21. The average human has 40 000 thoughts a day which should be about $60 a day if you got a penny for your thoughts. A biological urge to fantasise occurs roughly every 90 minutes.
Handy tips for communication
Useful strategies for maintaining communication and relationships: • Keep regular contact with friends • Laugh together & share jokes • Do a variety of tasks together • Show interest in others • Try to get along with others • Learn to deal with emotions • Realise others make mistakes • Don’t rely on just one person • Aim for self reliance • Be assertive in communicating needs & wishes.
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Sports concussions and acquired brain injuries