The problems that follow the illness can be divided into those that mainly occur immediately following the illness and are usually short term and those that occur sometime later (or only become obvious some time later) and are longer term. They can also be divided into those that are a direct result of illness (damage and disruption caused by infection and inflammation) and those problems that are an indirect consequence of the illness (emotional, behavioural and social).
Directly following the illness the fluid environment of the brain will contain debris and other unwanted substances that have resulted from the infection and inflammation. Clearing this away and returning the environment of the brain to normal will take some weeks or months. Typical problems during this time are tiredness and confusion as the brain conserves energy and because normal functioning is disrupted. This stage of recovery is helped by a programme of short periods of activity interspersed by periods of rest. As the weeks go by, rest periods can be reduced and activity, both mental and physical, increased. It is very important that activity should not continue beyond the point when tiredness is felt. Tiredness is the brains way of saying “stop” I’ve had enough. Many people recovering from encephalitis talk about the “one step forward 2 steps back” experience. What appears to happen is that recovery is going so well, they try and catch up on all the things they want to do. This is followed by days of extreme tiredness. The solution is to follow a programme of activity and rest, even on “good” days.
Longer term, more permanent, difficulties are caused by damage to nerve cells (neurons) and the networks in which they function. In some people there can be very little damage and no long term problems whilst other people have significant complications. It should be noted that a severe illness does not necessarily result in severe after effects and likewise a milder illness does not always indicate a good recovery.
The longer term problems that can emerge include physical and movement problems; altered sensation; control of emotions; communication difficulties; and cognitive problems. Cognitive problems (difficulties in the thinking parts of the brain) are the most common following encephalitis. Examples are processing information at speed, remembering what happened yesterday / last week, planning what to do tomorrow / next week. These difficulties are classed as “hidden” because they are not visible and may not be immediately apparent. This can lead to an underestimation of the impact of encephalitis. These, longer term, more permanent problems are termed “acquired brain injury” and may need the services of specialists to put together a recovery programme.
Coming to terms with a brain that functions differently can have huge emotional effects especially if, as a result, the person feels that they are not the person they were. This effect is not confined to the person who has been ill, close family and friends will be challenged by changes that affect the personality of the person they knew well. Contacting others in a similar situation via social networks, sharing experiences, can provide mutual support.
The social consequences can also be significant. A return to work will not be immediate and may be delayed for some time, even indefinitely. A reduction in family income and a decreased standard of living could occur, also a change in family roles and relationships. The cognitive or “hidden” disabilities such as memory problems and difficulties with communication, may impact on a person’s ability to socialise.
Synapse, a brain injury organisation in Australia, produce some excellent information, including a booklet called “Brain Injury: The Facts”. You can download the booklet from http://synapse.org.au/our-work/publications.aspx