Guidelines for recovery
With improvements in drug therapy and intensive care treatments, many more
people are surviving encephalitis. The long-term effects of encephalitis are, as yet,
poorly understood but can include muscle weakness, epilepsy and speech disorders,
difficulties with memory, learning, concentration and understanding.
Coming Round - the patients view
Many of the symptoms you have been experiencing in the acute stage of your illness,
especially the life threatening ones, are due to infl ammation (swelling) in your brain.
Once this infl ammation settles down the problems caused by this begin to resolve
and you start to regain normal consciousness and movement. This moment can be
a source of confl ict between yourself and your friends and family. They have been
through a very traumatic experience and may have been prepared to lose you, so their
feelings are of relief and joy that you have survived. You may remember nothing of the
illness, may in fact not even feel ill and be confused even angry at fi nding yourself in
hospital. You may be fi nding that your brain doesn’t work as well as it used to.
PEOPLE WHO HAVE BEEN ILL WITH ENCEPHALITIS NEEDS TIME AND SPACE
TO COME TO TERMS WITH THEIR ILLNESS AND ITS CONSEQUENCES.
Early Recovery - advice for friends and family
Recovery is aided by a structured timetable of graded mental activity followed by rest;
followed by graded physical activity followed by rest. Initially rest periods should be
long and activity periods short. Hospital visits should be kept short, and visitors should
not overwhelm the affected person with information. Trying to recognise more than one
person at a time may be taxing. Visitors should not bombard the person with questions
and especially should not ask the affected person to make guesses. People who have
been ill with encephalitis often suffer from memory problems and research has shown
that if they are asked to make a guess and give the wrong answer they will remember
that incorrect answer. They often become easily upset and have diffi culty controlling
their emotions, friends and family need to be aware of this and avoid causing undue
stress.
RECOVERY IS AIDED BY A STRUCTURED TIMETABLE OF GRADED MENTAL
ACTIVITY FOLLOWED BY REST; FOLLOWED BY GRADED PHYSICAL ACTIVITY
FOLLOWED BY REST.
Good nutrition is important for brain repair. Nutrients that are especially important are
antioxidants (found in fresh fruit and vegetables) and omega 3’s (found in fatty fi sh).
Your Future
Be prepared for a long period
usually falls short of complete.
of months even years.
Be prepared for some loss of brain function. Liken this to the loss of a fi nger or
hand from an accident. The only difference is that you (and others) cannot see it. It
is a “hidden” disability. Talking to others with the same problems can help and the
Encephalitis Society can put you in touch with other people who are experiencing the
same diffi culties.
Your brain’s view
As time passes and you and I feel better and better, people, even doctors, will tell you that we are
fi ne, “it’s time to get on with life.” That sounds good to me and probably even better to you. But
before you go rushing back out into that big wide world, I need you to listen to me, really listen.
Don’t shut me out. When I’m getting into trouble I’ll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I’ll do my best to make that
happen. The problem is that too many people in our situation get impatient and try to rush the
healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they
force their brains to function in ways they are no longer able too. Some people even push their
brains until they seize, and worse... I’m scared. I’m afraid that you will do that to me.
Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made
it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any
false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are
still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you
start back trying to resume your life. If I give you a headache, or make you sick to your stomach,
or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are
overdoing it; I’m trying to get your attention in the only way I can. Stop and listen to me.
Love, your wounded brain
(This is an abstract from “A Letter From Your Brain” by Stephanie St. Claire printed on the “Brain
Injury Ass. of Carolina” web site)
Last modified: July 2009