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Recovery and Rehab
Elaine Dowell and Ava Easton with advice and assistance from the Society's Professional Advisory Panel and members of the Encephalitis Society
The acute phase of the illness (the time of active brain inflammation) can last anything from a few days to two or three weeks. In some cases the person may be in a coma for a much longer period. The acute stage may be followed by a phase of fairly rapid improvement which slows down but recovery can continue over the years to come. No two cases of encephalitis will have an identical outcome.
Outcomes vary between those who are able to return to their former work and lifestyle (with perhaps only a slight change in their abilities) to those left profoundly disabled, physically, cognitively or both. A small percentage of those affected by encephalitis will need to remain in residential care for the rest of their lives.
Nerve cells may be damaged or destroyed by both the infection and inflammation. The resulting damage is termed an acquired brain injury (ABI). The loss of brain function from ABI can range from very minor impairment, such as some loss in speed of thinking, to more significant impairments. The degree and type of damage will vary according to the cause, the severity of the inflammation, the parts of the brain affected, and any delay in treatment. It is this combination which will determine the pattern of difficulties that remain after the illness. Significant changes may occur in personality and in the ability to function day to day even if there is a complete physical recovery. Coming to terms with these problems can be very distressing and challenging for everyone concerned. The person you knew, or who was you, may have changed and the person they have become, or you have become, may present with a number of problems.
During the early days, weeks or months after encephalitis, the main aim is to provide a safe environment and gentle stimulation to encourage the process of spontaneous recovery. In the later stages, when spontaneous recovery slows or stops, the main aims are to help the individual affected by encephalitis develop new skills, habits and strategies for coping with any remaining difficulties.
It is important not to underestimate the time that the person and the whole family will need to adjust, in both practical and emotional terms, to their new situation. Those involved have, in effect, suffered a complicated form of bereavement; it is not unrealistic, therefore, to think of allowing several months and sometimes years to come to terms with what has happened. The kind of knowledge needed in order to come to terms and cope with these problems does not reside in the pages of a medical textbook nor with medical expert - it comes from knowing what it is really like to have had encephalitis.