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

To date, the funding for people with a disability has been a cruel lottery

The amount of support and services for people with a disability, their families and carers has depended on where they live, what disability they have, and how they attained that disability. The NDIS aims to change all of that.

The Prime Minister released the Productivity Commission’s report on 10 August 2011 and all governments agreed with the recommendation to establish an NDIS. Rather than funding based on historical budget allocations, a funding pool will be
based on actuarial assessment of need.

It will recognise that disability is for a lifetime, and so it will take a lifelong approach to providing care and support. This means that assessment will look beyond the immediate need, and across the course of a person’s life. Taking a lifelong approach also means focusing on intensive early intervention, particularly for people where there is good evidence that it will substantially improve functioning or delay or lesson a decline in functioning.

Importantly, an NDIS will support choice for people with disability, their families and carers, and put people in control of the care and support they receive, based on need. An NDIS will ensure people are no longer “shut out” from opportunities and from independence by providing the appropriate and necessary supports that allow people with disability to reach their full potential.

It will nurture and sustain the support of families, carers and friendship groups – the very communities of support that are
critical to improving the lives of people with disability.

And it will include a comprehensive information and referral service, to help people with a disability who need access to mainstream, disability and community supports.

Latest updates

The first stage of a National Disability Insurance Scheme (NDIS) will become real for people with significant disabilities in South Australia, Tasmania, the ACT, the Hunter in NSW and the Barwon region of Victoria.

ACT: the timing for the launch of the NDIS may start in July 2013 or July 2014 and take a phased-in approach.

NSW: the first stage will begin in the Hunter region during 2013-14 for eligible residents from the local government areas of Newcastle, Lake Macquarie and Maitland.

Victoria: the first stage starts in the Barwon region on 1 July 2013 for eligible residents from the local government areas of the City of Greater Geelong, Surf Coast Shire, Borough of Queenscliffe and Colac-Otway Shire.

South Australia: From July 2013, an NDIS will be launched across the State, focusing on children aged 0-5 with significant and permanent disability. By 2014 the age limit will be extended to 13 years and in year 3 all children up to 14 years. A total of
around 4,800 children with significant and permanent disability are expected to benefit from the first stage of the scheme.

Tasmania: The first stage of National Disability Insurance Scheme in Tasmania will cover all eligible adolescents aged 15-24.

This approach has been chosen because it represents an opportunity to examine and improve the range of supports that need to be in place for young people with disability to ensure a smooth transition between school and work or higher education.

As more detailed information becomes available it will be posted on the NDIS website at www.ndis.gov.au.

This story was first seen in the Synapse bridge magazine Vol 8

Image via cbsnews.com

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 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 effect on the ability to control behaviour, emotions and thinking when these areas are often already difficult after the injury or stroke. Third, heavy chronic drinking can gradually lead to further injury or stroke 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 indicated by brain scans, performance on neuropsychological tests and increased behavioural problems.

Many specialists recommend that people abstain from alcohol for a least one year after the injury (if not permanently). If people decide to drink anyway, they should only drink a small amount until they become aware of how alcohol 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 program from alcohol and drug support services.

In making a decision on whether to keep drinking 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 may have powerful effects
• Depression will be worsened
• Alcohol and other drugs may cause seizures.

This story was first seen in the Synapse bridge magazine Vol 7