The Hidden Handicap - the Silent Epidemic

Article Title: The Hidden Handicap - the Silent Epidemic
Sumitted by: Craig Lock
Category (key words): head injury, brain injury, neuro-psychology

Publishing Guidelines: I hope that the following piece may be informative to others. This article may be freely reproduced electronically or in print. If it helps anyone "out there in the often very difficult, but always amazing 'journey of life' in any way, then I'm very happy.

Submitter's Note::

The following piece is from information that I've researched and collected over the past twenty years. Some of the writings are words from my own experiences and much material from sources unknown (some of which has been re-written and re-phrased by me). I am sharing this information in the spirit of promoting greater awareness of head (or brain) injury, as well as helping and hopefully encouraging "victims of the hidden handicap" to realise their full potentials and be all that they are capable of achieving and being.

Craig Lock
October 2005
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THE HIDDEN HANDICAP - THE SILENT EPIDEMIC

CLIMBING THE EVEREST WITHIN

Some Practical Issues in Dealing with Head Injury.

Head Injury: Some Facts

1. Lack of Insight

2. Memory problems

3. Poor concentration

4. Slowed responses

5. Poor planning and problem-solving ability

6. Lack of initiave - often incorrectly labelled as "lazy"

7. Lack of flexibility - a "one track" mind

8. Impulsivity

9. Self-centredness

10.Dependancy.
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THE LONG-TERM EFFECTS OF HEAD INJURY:

Head injury is the greatest cause of disability under age 40. There are devastating effects of brain injury on people's lives. With it come unique problems and effects - long term.

The presence of cognitive or personality problems have a large bearing on whether work is possible for the person. Even parttime work. Although the person's cognitive peficits may be subtle, they can be hugely significant; yet no less disabling.

IDENTIFY the person's strengths and weaknesses and devise practical strategies to avoid weaknesses. Then FOCUS ON STRATEGIES to alleviate and circumvent the problems as best as the person can.
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An excellent book is 'Living with Head Injury'
by MD. Van Den Broek.

Limited attention span and amazingly fatigued by simple tasks. The victim of severe brain trauma may cause surprise, if he or she appears exhausted by his work; because by then he may have no outward sign of the injury.

N.B: FATIGUE:
Fatigue has probably been the most significant factor in my life following my accident. My entire life has revolved around and been shaped by adjusting to that chronic tiredness and getting through each day.

They may not be quite the people they once were. In subtle ways they will be different; although the change may only be apparent to their closest relatives. The world, however, will see them as, and expect them to be "normal" (but then, what is "normal"?).

Some Common Effects of Head Injury:

* Lack of insight, lack of judgement

* Short term memory: There is a change in intellectual functioning. The sufferer may become confused, appear vague and avoid certain situations.

* Personality change. Avoid labelling them as lazy.

* Boredom and an apparent lack of interest.

* Dysphasia: May have trouble speaking, finding the right words, putting them together to make a sensible sentence. Often I wanted desperately to say something; but was quite unable to say the words. A big "jumble"!

Physical difficulties:

Weakness on one side with one's muscles, problems with motor control, loss of coordination, poor balance.
Cognitive (or intellectual) difficulties:

* I find it hard learning new things. Problems with attention and concentration???

* I experience great difficulties with information processing and with the speed of the processing, ie. especially difficulty with complex ideas and with shifting from one idea to the other.

* I have great difficulties with planning and organisation and put a big effort into that area to get by. The daily trials and tribulations of life!

* Slowness of thinking and to think logically. Less common sense than normal people!

All these effects cause me great frustration at times...and sometimes far more than others.

* Personality changes

* Visual inattention - unobservant.

* Very impulsive. Don't think things through much.

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NOTE: The following information has been supplied by the New Zealand Neurological Foundation.
Thank you.

Damage to your brain can affect everything you do. It may affect physical activities: hand strength and skills, balance, walking and running. What many people don't realise is that adverse long term effects can also occur after quite mild injuries, like being knocked out at football. I'm amazed at how many rugby players suffer numerous concussions, and still continue playing. Must be very bad for them...and Francois Pienaar (Springbok rugby captain) is still a very nice guy and perfectly "normal". But look after yourself, Francois, your country needs you.

Note:
Thank goodness the rule makers now have imposed an automatic two week ban (or perhaps it is longer) for rugby players, who have been concussed.
People who are recovering from head injury usually have problems with:
* Concentration
* Memory
* Organisation
* Irritability
* Fatigue
and
* their emotions

All these problems can occur after mild injuries, as well as serious ones. After severe head injury the control of FATIGUE and STRESS is the key to managing recovery. Fatigue damages all other functions and it's management is the most important single factor in returning to work after severe head injury.
I have found coping with my chronic fatigue my biggest challenge throughout my life!
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HOW HEAD INJURY AFFECTS THINKING - AND WHAT TO DO ABOUT IT

The parts of thinking that matter here are concentration, memory, organisation, self-control and fatigue. We'll talk about them separately, though they all interact on each other.
Concentration:
Concentration and attention are words, which describe how you can keep your mind fixed on what you're doing. It's vitally important; because most of the other functions of the brain, that we're concerned with epend on it. As an example, if you don't concentrate on what someone is saying, you won't remember what they said. As well as this, concentration is linked to the speed at which you can deal with information by processing it. Concentration is impaired for some time after all head injuries, where consciousness has been lost. It can also be impaired, when there has been no loss of consciousness - for example, in the whiplash sort of accident. As part of fixing your mind on the matter at hand, concentration requires you to shut out distractions. If you're not doing this well, you will find that other peoples voices, music in the distance or someone fiddling with a pencil will make you lose concentration...and at the same time probably make you angry and fatigued.
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Memory:

There are several sorts of memory. The recall of trivial things, that have happened in the last hour or two is recent memory. When it is impaired, you forget where you put your spectacles, who came to lunch, or what you had to get at the shops. It will be bad, if your concentration is poor. Events that you would expect to remember days or weeks later are stored in our long term memory. Things you do repeatedly, either as everyday routines, or as part of your professional skills, are called 'overlearned' and are firmily fixed in this part of memory. Head injuries almost always affect memory to some extent. Immediately after the injury, for minutes, hours, or days, depending on the severity of the injury, the human brain stops recording passing events. Though you may have recovered consciousness and be able to answer quite searching questions about your suroundings, this is not being stored in your memory - you are in a state of post-traumatic amnesia. When you start recording events again, you will find that there is a gap in memory from the moment of the accident. Occasionally "short islands" of memory remain; but the rest never comes back. It's not surprising that after this period of complete failure, memory should take some time to recover. The worst difficulty is with memory for events occurring in the last hour or two, or the last day or two. This results in trivial annoyance: 'where did I put my spectacles?' With more serious disability, important information is forgotten and appointments missed. Longer term memory is also affected: both storing new memories and recalling old ones. Both sorts of memory depend very much on the person's states of fatigue, focus and concentration. For example, it is far more difficult, when you're tired or surrounded by distractions.

Organisation:

Some people start the day knowing exactly what they have to do and the order in which to to the various tasks. They can re-organise their schedule, if the original plan is upset. Others are less confident; they need to think it out and then write a list of activities. After a head injury people are usually even less sure of how to organise themselves and plan their day - unless they concentrate on what needs doing and write a list, "bits and pieces" will be forgotten. Even then, if anything goes wrong, they're "thrown". That's me! As a result, it may seem as if they are lazy, or to have lost their motivation.

Self control:

Dealing effectively with something that annoys or threatens you needs a brain that functions quickly and efficiently. One which can retain an instinctive angry or even violent response. After head injury, people find it difficult to cope with the little annoyances of everyday life and tend to snap back...and this, of course, is worse when they are tired.

Insight:

To get on with people, at home and at work, you need to be able to look at your own behaviour realistically, and to read other people's reactions to you from the subtleties of what they say, or their body language. This is a complex and difficult skill and after head injury, may be too much to manage. This can show up as inappropriate behaviour towards others, perhaps undue familiarity, or neglecting ordinary social rules. The other important result of losing insight is that you may become unrealistic about how much your abilities have been affected, and be unwilling to accept advice or warnings.

Fatigue:

People normally adjust the amount of work they do each day and their hours of rest and sleep; so that the next day they can follow the same pattern without becoming tired enough to affect their efficiency. If there is extra work that just has to be done, they can push themselves to complete it; though they may need to go to bed early that night and feel tired the next day. Yet they can carry on in spite of this. I usually wake up tired, (even though I'm in bed each night by 9pm or 9-30pm at the latest!), as I push myself really hard with my writing! After a head injury, the amount of energy that you have is limited. To begin with, you will probably be able to cope with only a few minutes of concentration, either listening, talking or reading. If you try to press on and do more, the effort becomes too great, and soon you'll find that you just can't go on. As you recover, longer periods of concentration are possible; but the barrier at the end remains.

If you can live with this chronic fatigue, and stop just before you meet the 'barrier', then take a rest. I find by taking frequent breaks we can surprise ourselves and often achieve a lot. If you neglect the signals and do more than this, your fatigue will accumulate. A 'good night's sleep' won't be enough for you to recover and next day you will be washed out and good for nothing. That's me for sure, when I "push" myself too hard!

It's like a bank account. You're given so much energy each day;
but if you overdraw, the next day you have less to start with and fatigue comes on earlier. Keep on and by the end of the week you'll be a wreck.

Author's Note:
Even sitting out here in the sun totally relaxed checking this manuscript, I feel really tired...but I'll push myself for a while longer.

You may find that physical activities and exercise may not be too tiring. For many people after head injury, physical activities, like gardening, walking or swimming, do not take too much out of them, and provide a welcome diversion.

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MOOD AND EMOTION

It's not easy to get over the effects of head injury, and if progress is slow, you may get depressed. Because the injury will have reduced your control over your emotions, you will get upset easily. You may find yourself weeping for no reason. It's important to deal with the depression. Talk it over with your doctor. Support from family and friends, a therapist and sometimes counselling will help.

SPECIAL PROBLEMS WITH THINKING:

The problems described above are those which almost everyone encounters, when they have been affected by head injury. Some people have more specific difficulties with thinking - the common ones being concerned with finding and remembering words, or being able to deal with shapes, sizes, plans and locations.
TESTS

In the early days after the injury, the medical examinations are geared to making sure that there are no complications to the injury, such as blood clots pressing on the brain. A CT scan may be needed at this stage.

As you get better, the important thing becomes the way your brain is working, and at this stage special tests of thinking are useful. Measuring your power of concentration and the speed at which you can deal with information is probably the best overall test of function. It's also a good guide to when you're ready to start with some type of work. Tests of your ability to organise are also useful for this. In the early stages screening tests may be done, to see if you have any of the special problems in thinking, that were mentioned above.

CONCLUSION:

Sometimes I have a feeling of continual struggle to try and cope with the day-to-day complexities of the world??? Most frustrating. FFFFfflowers! A common reaction to these difficulties is to avoid the situations, to withdraw into a less complex and demanding environment. Avoid situations that cause you undue stress.

Through therapy and involvement in normal life situations, the patient may continue to recover for several years...in fact over the period of a lifetime.

An individual of forceful personality, with a high tolerance of frustration, showing drive and determination, will win through in the end more successfully than someone of less robust temperament.

SUBMITTER'S NOTE:

All the above information has been supplied by the New Zealand Neurological Foundation, which I'm sharing in the spirit of helping famililies afflicted by head injury..
Thank you for permission to re-use.

craig