Carers and family members often find themselves at the breaking point. Use these strategies to spoil yourself and make sure you care for yourself as well.

A carer needs to be aware of the cumulative effects of daily stressors and use strategies to reduce the impact of stress. Too much stress can have a negative impact on health, so carers (like everyone else) need to maintain regular exercise, a balanced diet, regular sleep and rest and relaxation.

Other useful strategies to work on include problem-solving on major issues, investigating and altering irrational beliefs, stress-reducing self-talk and meditation.

Dealing with stress

A balanced life can go a long way to reducing stress. To last the long haul, carers need to balance their needs along with those of their loved one, developing a lifestyle that balances caring with family, hobbies, socialising and work. Time management, goal setting and organisation can help to reduce stressors, create time for enjoyable activities and maintain social support.

Respite care

Long-term carers find that surviving is a matter of taking time out for themselves. Respite care is an essential part of the overall support that families often need. It can be provided in the client’s home or in a variety of out of home settings. Since not all families have the same needs, respite care is usually flexible to fit in with a family’s requirements.

Dealing with difficult feelings

Guilt, anger, resentment, fear, stress, anxiety, depression and grief are some of the emotions that will be encountered while caring for someone with a brain injury. With time, the worst of these feelings will go. It is normal to feel as if you are going crazy at times, and it does not help to try to suppress or deny what you are feeling. There is a reason you are feeling this way, and this will lessen when your body is ready.

The best way to deal with your feelings is to accept them, but make sure you can talk about your feelings with someone who understands, whether it is a family member, friend, counsellor or support group. Always seek professional assistance if you feel you can’t get past these issues.

Reasonable expectations of yourself

Avoid the superhero attitude! You may try to undertake all the caring whilst being a model of patience, courage, understanding and support and sacrificing yourself in the process. Be prepared for times when you feel like quitting, yelling, leaving and breaking down. The caring role is similar to running a marathon – you need to pace yourself for the long haul. Trying too hard in the early stages may mean you lose all your energy further down the track when your caring may be more crucial.

Support groups

Why join a support group? You can meet others in a similar position, have a break, get information and get support from others who have a shared experience. Sharing ideas, feelings, worries, information and problems can help you feel less isolated. Sometimes family and friends don’t understand the condition of the person you are caring for. People in the support group will often understand. Support groups bring together carers in local areas, sometimes under the guidance of a facilitator who is experienced in supporting carers. Often other carers or workers are invited to present information and training. Call StrokeLine 1800 STROKE (787 653) we can help put you in touch with carer support groups in your area.

Counselling

Counselling involves talking to someone who understands and can work with you to give you the encouragement, support and ideas to improve your situation. It can be a way to assist with the many changes in your relationships and roles, as well as dealing with the strong feelings associated with caring. Call StrokeLine 1800 STROKE (787 653) we can put you in touch with support groups or organisations who can provide counselling or other psychological assistance.

Planning for health

Regular exercise, rest and nutritious food are all necessary in order to withstand stress. Try to plan your day so you get all three. Walking, swimming, yoga, gardening or dancing are good ways to get some gentle exercise. Learning to relax by listening to pleasant music, meditating or doing specific relaxation exercises can help you sleep better.

Self-advocacy

At some point, carers may find themselves unhappy with the level of support from a particular hospital, health professional or welfare association. You have the right to expect appropriate support and treatment, and should be assertive in claiming what you want.

There are grievance procedures and appeal processes in most cases. Your Brain Injury or Stroke Association or call StrokeLine 1800 STROKE (787 653) may be able to assist, or link you with advocacy organisations.

Keeping friendships and interests

Try to relax and enjoy yourself. Maintain an identity of your own separate from the person you care for. Try to keep your links to the world outside caring. Absorbing interests, having fun and relaxation are all good for your physical and mental health. Be aware that some friends may tire of you talking about the hassles of being a carer. Some carers can become resentful and lose friends by expecting them to provide more support than they are willing to give. Where possible, seek support from other carers and don’t expect too much from friends - even if it means pretending to be interested in things other than your own problems as a carer.

This story was first seen in the Synapse bridge magazine www.synapse.org.au

Guest blog: Written by massage therapist Elle Rossi, who is a valued friend of the National Stroke Foundation and regular donor supporter. Thank you Elle for your ongoing support.

In this essay I would like to share with you my experience and feelings as a massage therapist in treating and helping a client who had suffered from a cerebrovascular accident (CVA) by using a number of tools or techniques that may be incorporated under the general heading of Remedial Massage. It is written in a simple narrative style describing my client’s (I will call her Jane in this text) journey to recovery over an 18 month period.

In July 2004 Jane presented to my clinic seeking in her words “therapy” for her shoulder and arm. She had suffered a CVA or stroke 2 years previously on the left side of her brain leaving her with a complete paralysis of the right arm and partial paralysis of the right leg. She felt that she had had a further “mini stroke” the previous weekend as her speech had become slurred for a few days and mobility further impaired.

Jane had previously had extensive physiotherapy in a rehabilitation hospital and regained the ability to walk with the aid of a tripod walking stick but her right arm remained useless. On examination I found :

• The right arm was cold and blueish in color and hung limply with no feeling or movement from her elbow down.
• There was oedema (swelling) of the whole arm.
• The fingers of the right hand were curled and a splint was needed to keep them straight.
• There was subluxation of the Glenohumeral joint, probably due to the constant weight of the arm hanging and over stretching the ligaments. Jane informed me she had been given a referral to an orthopedic surgeon by her GP to correct this surgically.
• In the meantime, although wearing a supportive brace, she was experiencing a great deal of pain in the shoulder and was unable to sleep at night because of this.

I had learned during my nurse training in the 70’s that the optimal window for rehabilitation post CVA was only 6 months in duration after which the chances of regaining useful movement in an affected limb were very limited therefore I felt strong doubts that I would be able to improve Jane’s condition 2 years on. I discussed expected outcomes with her under the circumstances and suggested a physiotherapist may be able to help her more but she preferred to give massage a try.

At the time, not having caught up with the research into neuroplasticity and the power of the brain to heal and transform itself, I privately felt at a loss as to where to begin with a treatment plan so simply started with a gentle massage to the shoulder and arm to improve the circulation and some gentle passive arm movements within her pain limitations.

We scheduled for 2 sessions a week gradually extending the massage to include the whole body releasing tight muscles on the left side that were working harder to support the right and passively moving the joints of the right shoulder, arm and hand through their range of movement i.e. abduction, adduction, flexion,extension,pronation and supination etc. While doing this I intuitively asked Jane to link the exercises to an act of daily living in a form of creative visualization. For example when I flexed her arm forward and up Jane imagined pegging out the washing or reaching for a cup in an overhead cupboard. Each movement was accompanied by a thought or mental picture of doing something useful and specific. In a seated position facing me I held Jane’s hand and asked her to imaging pushing me away or pulling me forward while I moved the arm for her.

By October after 3 months of treatment Jane’s pain levels had lowered considerably and she was sleeping well at night. Her arm felt warm and looked a normal colour again. The oedema had gone and the first sign of improved movement was noted as she could actually pull her arm back from me. The orthopedic surgeon decided to wait before operating and advised continuing the exercises and gave her a cortisone injection into the shoulder to help. Happily surgery was cancelled altogether some months later.

We added proprioceptive neuromuscular facilitation (PNF) exercises to strengthen each new little movement that slowly came back to her fingers, hand, elbow and shoulder joints and continued with full body massages and more specific remedial massage to the arm and hand. By March 2005, 8 months into treatment Jane was able to straighten her fingers, flex her wrist and elbow and grip weakly with her hand.

During this time Jane had other health issues to deal with and experienced angina like chest pain and gastric pain for which she received medical investigations and treatment. In order to support this some of her sessions with me were dedicated to Healing Touch techniques mainly aimed at opening and balancing the chakras. In addressing and correcting the energetic blueprint aspect of her body we aimed to subsequently influence and improve the physical recovery.

In September 2005 Jane was able to lift her arm unaided to her mouth, opposite shoulder and place it behind her back. She could also carry her purse in her right hand for the first time but still needed work to improve the dexterity of her fingers. We also worked on improving strength by filling a water bottle and using it in some weight training for the arm.

Around November/December 2005 Jane went through a plateau in the healing process and felt “flat and despondent” .Unfortunately in January of 2006 her husband sadly passed away adding an additional emotional trauma to overcome. Although going through bereavement Jane continued treatment and I worked using craniosacral techniques to her head and sacrum in order to give her central nervous system the best possible environment in which to function and heal. She reported an improvement in mood and greater ability to use her hand before ending her treatment.

Shortly after Jane moved away from the area but her family tell me she is still well, using her hand to play cards and lift a glass of good wine!.

In 2007 a book by Norman Doidge, MD was published called The Brain That Changes Itself. The chapter on page 132 specifically addresses the topic of CVA or strokes and although treatment has come a long way in the past years the rehabilitation aspect in standard hospital care world wide still leaves a lot to be desired. Victims are discharged before recovery is complete and full potential is rarely realised.

In reading this book I was able to understand why the techniques used in Jane’s treatment were effective and feel saddened that many people are not able to avail themselves to appropriate follow up treatment within the health care system.

Since then I had the privilege to meet another younger stroke victim in my clinic who had been discharged from hospital still unable to walk. He told me he had hired a therapist and instructed him to ” get me out of this wheelchair! “. At the time of our meeting he had sufficiently recovered enough to walk and tandem cycle around Australia with his wife in order to raise awareness on this subject!.

My hope is that in reading this article other massage therapists will feel more confident in helping those who have suffered a CVA and perhaps sooner rather than later it will become part of standard care in a rehabilitation program available under Medicare.

Elle Rossi
www.pembertonmassage.com.au

Disclaimer: You must not rely on the information on this blog as an alternative to medical advice from your doctor. If you have any specific questions about any medical matter you should consult your doctor.

This disorder means people will experience difficulty in finding their way in familiar surroundings.

Topographic disorientation (TD) can be very disabling yet may go undetected. This inability to navigate through the environment usually involves the person being unable to learn routes in new environments as well.

TD is generally viewed as an impairment in spatial memory and has been given different names such as visual disorientation, topographic amnesia and spatial disorientation.

Making our way around our house or driving across the city is a complex behaviour involving many components. TD varies from person to person depending on the area of the brain affected. For example one area of the brain acquires spatial information, another develops long-term representation of position while another will perceive relevant landmarks on a journey.

A person may not even remember how to get around their home any more. Another may remember strategic landmarks but not be able to compute their positional relationship to each other. Others may remember well established routes but be unable to learn a new one. The degree people are affected by TD depends on whether they can develop strategies that will compensate for the disorder.

Some people can still make their way around town by using maps and constantly asking for directions. Some may benefit from the GPS satellite navigation units that can now be fitted to cars which will give verbal instructions to reach destinations.

Small portable units are also available and becoming cheaper each year.

Condensed from the Topographic Disorientation fact sheet at Synapse.org.au

This story was first seen in the Synapse bridge magazine www.synapse.org.au

Sleeping disorders after a brain injury (stroke) can be another problem you don’t need during your rehabilitation.

Lack of sleep has a negative effect on our cognition, mood, energy levels and appetite. The average person needs eight hours of sleep a night or will suffer from decreased concentration, energy and many other problems. These effects are multiplied many times by a brain injury.

Unfortunately, a brain injury can often lead to a sleep disorder. This can be hard to detect as people with brain injuries can also experience fatigue. Although some people may have problems with getting too much sleep, the usual sleep disorder is trouble sleeping at night followed by feeling drowsy during the day.

Causes of sleeping problems

After a brain injury many find it not only difficult to sleep, but they are very easily awakened, sometimes dozens of times a night. On top of this, they may find themselves unable to sleep at all around 3am, despite being desperately tired. Sleep will usually be very light, so the smallest noise brings the person instantly awake. Research suggests a major cause of disruptions or “sleep fragmentation” is a change in release of neurotransmitters in the brain during sleep.

There can be a variety of other causes for disrupting sleep. Discomfort from headache, neck pain or back pain will always make it hard to get to sleep. Depression is a common feature after a brain injury and people may find they fall asleep easily but wake up several hours before dawn, unable to sleep again. Anxiety and inability to handle stress are other common problems. Negative thoughts whirring through the mind will usually make it very hard to fall asleep also.

Sleep your way to recovery

Sleep plays its part in not only helping the brain to recover from injury, but in physical healing as well. In a Traumatic Brain Injury, there are often muscles damaged. During active sleep, the brain stem secretes hormones that in effect paralyse our muscles to prevent twitching. This can play a role in helping muscles to heal, but poor sleep will hinder this process.

Medication and sleep

There are medications that can assist with sleep problems. Some medications are designed to promote sleep but they are typically avoided by physicians who treat brain injury. Typically, the medication is taken a half hour before bedtime and assists with sleeping through the night. Sometimes this medication works too well and people sleep for 12 to 15 hours for the first two or three days.

Some people report side effects such as difficulty waking up in the mornings. Lowered sensitivity to some medications can also occur after extended use - reducing medication effectiveness. It is important to always seek information from your doctor before starting, stopping or changing any medication. Only use medications as your doctor prescribes, and always inform them of any preexisting conditions (e.g. Brain Injury or stroke).

Practical steps to good snoozing

Routine is vital for sound sleep. Go to bed at exactly the same time every night — even on the weekend. Do not vary this by more than 15 minutes. That may sound extreme, but if you go to bed at the same time and get up at the same time each day, your body will adjust to that pattern. Avoid caffeine and nicotine. These stimulants have a negative effect on the brain, and for some people may increase the likelihood of seizures.

Don’t get the body stimulated with exercise late in the evening. Make sure your bedroom is at the right temperature and that the room is very dark. This can be very important because light plays a critical role in your sleep pattern. Make sure it’s quiet as well. Talk with family members about respecting your need for a quiet environment.

So what about naps during the day?

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

When stress, anxiety and negative thoughts are involved, cognitive behavioural therapy can also help. Speak with your GP about seeing a Psychologist or Neuropsychologist who can help you out with this.

This story was first seen in the Synapse bridge magazine www.synapse.org.au

Your family member is discharged from hospital and you are ready to continue their rehabilitation. The steps listed below may serve as a guide if you wish to develop a program using free or low-cost resources which exist in your community.

Step 1: Obtain detailed objective information

The injured person: Since research has clearly demonstrated that the most disabling consequences of brain injury are cognitive and behavioural, information about the person’s current level of functioning in these areas is essential if a realistic program is to be developed.

You need specific information on things such as how much can be learnt, what is the best way to learn, what activities are most likely to present problems, what limitations there may be perceptually, and how you can set things up to maximise abilities. Your rehabilitation program must also take physical limitations into account.

In addition to general information about the person’s medical status and physical abilities, thorough evaluation of both visual and auditory systems should be completed. Management of medical needs must be an integral part of the rehabilitation program. Adaptive equipment such as a wheelchair, braces, and communication devices, must be appropriate to the person’s current needs and in good repair.

Your support system: Family members must objectively decide how much time, money and emotional energy they will be able to commit and how long they will be able to do so. This includes such factors as who will provide transportation to activities, supervision in both the home and the community, and what materials will be needed. An organised program requires the effort of more than one person - unless it is undertaken in extremely small and manageable steps.

Community resources: This is definitely the time to start ringing around. A wide range of community services, many of which are paid for by your tax dollars, are available in most communities and are appropriate for people who have sustained brain injuries. Most of these agencies do not advertise; many are not aware of the special needs of those who sustain brain injuries and how their agency’s services might be utilised by this population. Think outside the box and don’t be afraid to approach these community services for assistance.

Step 2: Develop and implement your program

Now you are ready to set specific rehabilitation goals. Since you are designing your own program, you are free to include only those activities which you feel will be helpful to the injured person and for which you have the time, resources and energy to follow through. Certain problems occur often enough that the broad areas which must be addressed can be identified even though specific activities must be decided by family members. Among these common areas, and in chronological order of importance, are:

Survival skills goals: Those activities which have the highest survival value (daily routines such as showering, grooming, toileting, dressing, sleeping and eating) should receive concentrated attention in the initial phase. Goals should address the mechanics of completing the task as well as the amount of time required. Goals in this area have been accomplished when the person is able to awaken on his/her own, independently complete his/her morning hygiene routine, and prepare and clean up after eating; they should be dressed as if going out in the community each day.

Basic cognitive goals: People who have sustained brain injuries are frequently extremely distractible and can often have limited ability to attend to and concentrate on tasks. Until attention and concentration are improved, community-based activities may be problematic. Initial cognitive retraining activities should probably be conducted within the home setting.

Appropriate activities might include working on craft projects from books in the public library, playing simple board or card games, or playing simple video games. Since pre-injury information and skills are frequently relatively intact, the person may be able to play games which were learned pre-injury (such as checkers or poker) without having to learn new rules. At this stage, the ability to learn is not being addressed, only the ability to attend and concentrate.

While such activities may initially require a quiet distraction-free environment, the amount and type of distractors should be increased as attention and concentration improve. The amount of consecutive time devoted to such activities can also be gradually increased until the person is able to continue at the task for a realistic amount of time.

Basic behavioural goals: When the person is able, at least at minimal levels, to attend and concentrate, to learn, and to remember, behavioural contracts can be used to reduce the frequency and severity of specific targeted behaviour problems such as verbal aggression, perseveration, or social skill issues.

Information about behaviour management strategies can be obtained from your brain injury association. It is critical to ensure that behavioural goals are not all negative, e.g. designed to stop behaviours. You must balance behaviours to be stopped with those you wish to see started so that the person is not left with a behaviour void. Your behaviour management program should utilise appropriate rewards to encourage the person to behave in more positive ways.

At this point in time (if you are not already doing so) you should begin to give honest, objective feedback to the injured person on specific maladaptive behaviours and your reactions to them. Although such direct oral feedback is not customarily given in most social settings, the injured person may not understand why he fails to make friends unless he is provided with such information.

Social/recreational goals: One of the most frequent complaints voiced by people with a brain injury is the lack of friends and social opportunities. The reasons for this are varied but physical limitations, behaviour control issues, decreased cognitive capacity and poor social skills are often major culprits. In many cases, the person may lack insight into the nature, range, severity or even the existence of deficits following the brain injury and may seem generally unable or unwilling to modify his/her behaviour.

This could be the case even in the face of interpersonal cues which are not at all subtle. Once the person’s behaviour is positively altered in the home setting, community recreation activities are often introduced in the rehabilitation program.

Your local state stroke association should have a list of recreation programs set up for people with disabilities. Don’t be limited by disability programs, however. If you feel able, reach out to other recreation programs in your community - try your hand at opening their eyes to inclusive practices, and including your family and loved one in their group. This can take time and education sessions (speak to your local Brain Injury/Stroke Association or call StrokeLine 1800 STROKE (787 653), however may be more advantageous in the long-term.

Academic goals: Some people with a brain injury may be able to successfully enrol in academic programs once their basic cognitive and behavioural deficits have been remediated or despite remaining deficits. The line between rehabilitation and education begins to blur at this point, especially when the courses or subject areas had not been attempted prior to the injury.

If you are considering including a formal academic component, you should determine whether the person can keep track of class times, take notes, study for an examination, and learn the information presented. Also to be considered is having to deal with transportation to the campus, locating a specific classroom or dealing with distractions in the classroom.

Speak with the campus’s disability service. Most will have one and they can generally offer services such as notetaking, recorded lectures and one-on-one tutorials to assist.

Vocational goals: Some people with brain injuries may recover sufficiently to return to either sheltered or competitive employment; others will be able to contribute to their communities in volunteer positions. Many people will be unable to pursue vocational goals because their salary would not compensate for government or private sources of disability income and/or benefits. People who are not eligible for benefits may have to attempt to return to work if they wish to live above bare subsistence levels. If and when re-employment is a realistic goal, the Commonwealth Rehabilitation Service can assist in exploring vocational options and getting back into the work force.

Step 3: Monitor progress and update as needed

As the program progresses, you should find that the person’s cognitive and physical endurance, performance speed, and skills are steadily improving while the demands on your time are steadily decreasing. You must be able to fade yourself from the picture at appropriate times, even when you are not completely sure the person can perform the activity without your help. As the person’s skills improve, you must make certain that your expectations rise so they are commensurate with his new abilities. When indicated, set goals at higher levels. The myth of the plateau, which suggests that people who sustain brain injuries reach a certain point in their recovery and then stop making progress despite the best rehabilitation efforts, must also be challenged as your program progresses.

When progress appears to be levelling off, it may be useful to think of that time as a period of consolidation of newly-acquired skills, a time for the repeated practice which is required to integrate the new information and skills with the old until they become as routine as possible.

At some point in time the injured person and/or family members decide that they no longer wish to pursue rehabilitation. On rare occasions this occurs because all goals have been met; usually other factors such as extremely slow progress, the wish to pursue other activities, or burnout account for this decision. The fact that a structured rehabilitation program is no longer in place does not necessarily mean that the injured person will stop acquiring or refining skills, or that deterioration will occur, although both are certainly possible.

The long-term success of your program may be contingent upon continued effort on the part of all family members, especially the injured person.

Many thanks to Judith Falconer Ph.D. for permission to adapt this article from her website at: brain-train.com.

This story was first seen in the Synapse bridge magazine www.synapse.org.au

National Stroke Foundation advocate Alice Zaslavsky took some time out of her busy schedule to share with us a quick, healthy and tasty recipe during PAUSE for FAST month. Take some time to watch this clip where Alice shares some of her cooking tips. We would love to hear your thoughts on this delicious recipe! You can see Alice live at our upcoming fundraising event Food for Thought Melbourne

Jewelled Quinoa Salad with Last Night’s Roasted Veggies

Ingredients:
Dried cranberries/any other dried berries
1 pomegranate, seeded
250g Quinoa (any colour will do, as will couscous!)
500ml water
500ml Vegetable stock
Last night’s roasted veggies
Spring onions
Rocket/mixed lettuce leaves/watercress
Light-bulb cherry tomatoes, halved
Avocado, roughly chopped
Toasted unsalted pistachio nuts
Fresh coriander, leaves picked
Olive oil
Lemon zest
S&P

Methodology
1. Rinse quinoa a couple of times under running water in a colander; then, add quinoa to water & stock combo and bring to the boil; reduce the heat and simmer, covered for approx. 15 minutes or until the little white thread sprouts. Allow to cool.
2. Combine all ingredients except for olive oil, pistachios & rocket/mixed leaves in a bowl
3. Toss through rocket & olive oil for each serve, top with toasted pistachio nuts

Handy Hints
- Keeping rocket and olive oil out of the mix will mean that this baby can stay in your fridge for quite a few days!
- This is one of those versatile salads where anything goes – just keep tasting as you go, focusing on a balance of flavours
- This makes fantastic lunches- portion it out into takeaway containers and use them as you need them!

FAST is an easy way to recognise the signs of stroke

Face – has their mouth drooped?

Arms – can they raise both of their arms above their head?

Speech – is their speech slurred? Can they understand what you’re saying?

Time – Call triple zero (000) immediately. Do not delay.

Already shown to predict myocardial infarction risk, coronary artery calcification (CAC) can also predict a patient’s risk of stroke, new research shows.

In results at odds with three previous studies, German doctors claim plaque build-up in the coronary arteries can be used to predict a person’s risk of future stroke independent of atrial fibrillation or other major risk factors.

Reporting in Stroke, the researchers said results from their eight-year study show CAC can add to a patient’s Framingham risk score – albeit only in those in the low (<10%) or intermediate (10-20%) categories.

“These observations indicate that among cohorts without apparent risk, subjects exist that nonetheless exhibit a high stroke incidence,” the investigators said.

“On the basis of our data, CAC is suitable to identify those subjects.”

Using electron beam-computed tomography, the researchers measured plaque in the coronary arteries of 4,180 patients aged 45-75 with no previous strokes or heart attacks.

Over the next eight years, strokes were far more common in patients with more plaque build-up. Patients found at baseline to have CAC levels of more than 400 Hounsfield units (HU) – a density measurement – were three times more likely to have a stroke than those with levels below 399 units.

The measure was better at predicting stroke events in over-65s than younger people, the researchers found. They said the marker was “promising for risk stratification" for both cardiologists and neurologists.

Lead investigator Professor Dirk Hermann of Essen University Hospital in Germany, said: “CAC seems to reflect a marker of generalised plaque burden, indicating the presence of systemic atherosclerotic disease”.

Explaining why their study had found what three other studies had not, the authors said the previous trials were likely too small.

Article first published in Neurology Update March 05

Lack of self-awareness is a common outcome for people with frontal lobe injuries and is related to emotional and personality variables.

People with a brain injury may be unable to recognise disabilities they have, even when they are obvious to everyone else. In other cases, they may not realise the extent of a disability, and believe that everyone is exaggerating these impairments. They may exaggerate their own abilities in terms of social skills or emotional control, and have unrealistic ideas about the future. This lack of self-awareness is not denial.

Denial involves rejecting knowledge. Where there is lack of self-awareness, there is no knowledge to reject — the person is, due to their brain injury, simply incapable of understanding the true state of things. Not surprisingly this inability to recognise deficits causes many problems for rehabilitation.

The need for rehabilitation services will be questioned, and there is often a complete lack of understanding of how cognitive problems impact upon their relationships with family and friends. People with a lack of self-awareness may return to work but not understand why they fail in the workplace. They are unable to set achievable goals at work or evaluate their own performance realistically.

Understandably this can affect one’s vocational confidence.

3 types of awareness impairment

Impaired intellectual awareness is where a person is unable to understand that a deficit exists. The second type is impaired emergent awareness, where a person knows there is a problem but is unable to realise when the problem is occurring, or to compensate for the deficits. The third type is impaired anticipatory awareness, where the person is aware of the deficit, can recognise when the problem is occurring, but is unable to anticipate the likely situations in which the problem will crop up.

The family takes the brunt

The impact on the family can be immense. If they confront the family member with ABI there can be an angry reaction. At times the
family may try to believe nothing is wrong in their desire to see their loved one get well, even though this could lead to dangerous situations such as driving with a visual impairment.

A family should set specific goals that have to be met before the family member can forego treatment or supervision. Ideally this should happen with the involvement of rehabilitation professionals.

It’s your fault, not mine

Another impact on the family is that external causes may be wrongly blamed for problems that develop. Linked with lack of self-awareness can be a refusal to own up to mistakes and blame other people or external causes. A useful strategy is encouraging them to look at situations from an outside viewpoint and analyse what happened. Ideally a problematic situation could be videotaped to aid this process. The hardest part of being blamed for something is to not take it as a personal insult. Arguing will only worsen the situation, so usually it is best to agree to disagree. A common response could be “We both see this from different angles, so let’s leave it there”. If blame is a constant problem the whole family should look at adopting very consistent responses.

Seeking professional help

If lack of self-awareness is treated professionally the first step is usually a neuropsychological assessment. This will assess the person’s cognitive strengths and weaknesses, specify the impaired awareness and suggest a treatment plan. Usually the family will be included in this process.

There are various psychotherapeutic techniques used to help increase a person’s self-awareness. The therapist first gains the person’s trust, then gently helps them to see the discrepancy between their perceived level of performance and their actual level of
functioning. The next step is normally to help the person anticipate and plan for the problems their deficits may bring about by teaching strategies to deal with them. Treatment methods will vary depending on the type of awareness impairment.

The long road to awareness

Lack of awareness can lead to poor recovery for people whose brain injury has resulted in this condition. Family members should be on the lookout for this and seek treatment when required to enhance the quality of life for the family member with brain injury.

This article is reprinted from Acquired Brain Injury: The Facts, our 62-page guide to living with a brain injury. Pick up a free copy from our office, or visit www.synapse.org.au to order a copy.

This story was first seen in the Synapse bridge magazine www.synapse.org.au

Workplaces can adopt a range of strategies that enable a person with an Acquired Brain Injury to become or remain productive employees.

Each person’s circumstances are, of course, unique. A person with an Acquired Brain Injury (ABI) may experience changes in
one or more of the following:
• thinking skills
• emotions
• physical functioning
• communication.

Many people are able to learn ways to compensate for or minimise the impact of these changes in a workplace to successfully return to paid employment.

Steps that can help people return to work Sometimes even slight modifications to the workplace or workflow can increase productivity. Here are some examples of workplace adjustments that have helped people to get or keep their job:
Shane experiences difficulties with learning new tasks, particularly when instructions are verbalised. After discussing this with his
employer, Shane was taught new procedures through practical demonstration, with the tasks broken down into steps. Shane was also given time to make notes when he came across new information. Both strategies allowed Shane to successfully learn new tasks in suitable time frames.

Sarah becomes physically fatigued during the second half of her shift. Her employer has assisted her to restructure her day so that she performs the less demanding tasks while seated later in the day.

Graham returned to work as a kitchenhand after a head injury. He remembered the basics of food preparation but had some visual difficulties which made it hard for him to find the utensils and food items that he needed in storage spaces such as the fridge. Graham’s employer created a consistent storage system and discussed this with Graham’s two co-workers. Initially some labels were necessary to make sure everyone stuck to the same system. Ultimately this enabled not only Graham but also other employees to work slightly faster, and cope with the busy meal times more effectively.

Bob needs to take time off work for hospital appointments but he has used all of his sick leave. Bob’s employer has offered him leave
without pay.

Vanessa could perform most of her work duties competently, but had trouble taking phone messages; while concentrating on what
the other person was saying she found it hard to write all the relevant information down. She talked to her employer, who helped her to develop a ‘messages’ template that was specific to the workplace needs. This cut down the amount of information she needed to write while on the phone, and helped her to ensure that she asked customers all the important questions.

How does CRS Australia help in the workplace?

CRS Australia employs professional rehabilitation consultants with skills in assisting people with an ABI to enter the workforce or return to work, and keep their job. CRS Australia can help employers by ensuring there is an effective job match, that is, finding the right person for the job. We provide people on a rehabilitation program with skills training and we also offer an ‘on-the job’ training scheme. We negotiate all aspects of the work training with the employer and the jobseeker. We can also assist employers to make adjustments if necessary to enhance work performance. The best person for the job may indeed be someone with an ABI.

Employers can contact CRS Australia for assistance if one of their employees is at risk of losing their job because of an injury, health
condition or disability. We stay in touch for three months after the person starts or returns to their job, to help make sure the job is working out well for both employer and employee.

CRS Australia also ensures the employer will have continuing support by working closely with the employee’s treating health professionals, family and other support networks.

This article is adapted from a range of fact sheets with permission from CRS Australia. Visit www.crsaustralia.gov.au to find other useful fact sheets.CRS Australia helps thousands of job seekers find and keep jobs, and works with employers to keep workplaces safe. If you are an employer, CRS Australia can help you find a great candidate for your next vacancy, provide expert workplace safety services and manage your injured worker. If you have a disability, injury or health condition and want to get or keep a job, CRS Australia can help. CRS Australia will work with you to manage the barriers you face in getting a job.

This story was first seen in the Synapse bridge magazine www.synapse.org.au

Communication, difficult issues & adapting lives

When a condition is first diagnosed, there are so many things to work through that sex is often low on the list of concerns. Eventually, the urge to return to intimacy and a sexual life is likely to be important for most people — of all ages.

Then the questions begin. Is it possible? Is it safe? Am I being selfish even considering it? Will he or she still find me attractive? Can I
be a good lover? Will my erection last? Can I have an orgasm? What if I lose bladder control during sex? How can I have a sex life when I’m always tired? Will my partner continue to love me? How do I get interested in sex when I’m dealing with everything else?

Keeping channels of communication open and discovering appropriate avenues for sexual expression can have significant benefits to your overall feelings of happiness and wellbeing. If you are having problems, do ask your doctor or condition-specific supportorganisation for advice or more information.

Many types of Acquired Brain Injury (ABI) and neurological conditions can affect a person’s sexual response directly. Some progressive conditions only affect sexual abilities as time goes on.

A common worry for people after stroke is whether sexual activity will cause another stroke. The concern here is blood pressure. We
all experience a sudden rise in blood pressure as excitement increases, but if it is already high this can cause problems. Check with your doctor. It also helps to make having sex more effortless, and your partner may need to take the more active part. A partner with high blood pressure is also likely to be on tablets to control it. These may affect the ability to have intercourse. If this is a problem, talk to your doctor. There are tablets that do not have this side-effect.

How chronic conditions affect sexual activity

Difficulties often arise as chronic neurological conditions progress, such as:
• physical changes
•cognitive changes
•fatigue
•incontinence
•emotional responses
• personality changes
•self-esteem and self-image.

Physical changes

For example, symptoms such as paralysis, weakness, spasticity, poor balance, muscle wasting or pain may require couples to adjust
their positioning or types of sexual activity.

Cognitive changes

Brain damage can affect cognitive (thinking) abilities that have an impact on a person’s sex life. For example, emotional instability (often part of ABI) and poor communication due to speech difficulties can be disruptive.

fatigue

Fatigue can have a significant impact but if you know when it is most likely to occur, you can plan time together around it. Medications can also increase or decrease tiredness or change muscle function, which you may need to take into account as well.

Incontinence

The fear of bladder or bowel accidents makes some people uneasy but there are ways to minimise the likelihood: go to the toilet immediately before love-making, adopt positions that minimise the chance of reflex emptying of the bladder and having towels and a
sense of humour on hand, just in case.

Emotional responses

Depression, anxiety and stress that occur, either as a result of changes in the brain or in reaction to brain injury, can also reduce sexual desire. If depression is an issue, treatment can make a huge difference. Talk to your doctor. Strategies for reducing stress can also help.

Personality change

When brain injury affects aspects of someone’s personality, it can feel like you are living with a stranger. Occasionally, demanding
or inappropriate sexual advances are an issue. A neuropsychologist can help with strategies that minimise difficult new behaviours.

Self-esteem and self-image

Sexual response is also tied up with our self-image and self-esteem. Both depend on our ability to accept ourselves and to not be
influenced negatively by the perceptions of others, but both are challenged when someone becomes chronically ill. Self-image can take a battering when a person’s physical appearance changes. Self-esteem can falter if the person is less physically able to engage in sexual activities. If these are serious issues for you, consider seeing a sex counsellor or joining a support group. Your doctor or stroke support group can help with referrals.

The well partner

Well partners often experience guilt, frustration, resentment, anger, exhaustion, depression or combinations of these states. It’s
hard to switch from

This story was first seen in the Synapse bridge magazine www.synapse.org.au