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Unlocking the locked in; a need for team approach in rehabilitation of survivors with locked-in syndrome.
[locked-in syndrome]
A
stroke
that
affects
the
medulla
oblongata
and
/
or
pons
can
result
in
tetra
pareses
and
paralysis
of
the
lower
cranial
nerves
while
other
parts
of
the
brain
remain
intact
,
thus
locking
the
person
in
.
The
incidence
and
prevalence
is
not
known
.
The
aim
of
this
article
is
to
communicate
the
need
for
and
benefits
of
a
comprehensive
rehabilitation
and
a
standardized
way
of
approaching
the
locked-
in
person
.
To
illustrate
the
rehabilitation
process
,
we
present
four
cases
to
highlight
the
needs
of
the
person
and
what
is
required
of
the
team
.
 
Communication
at
arrival
:
three
persons
communicated
through
eye
movement
,
one
by
weak
voice
.
At
follow-up
(
1
-
6
years
later
)
:
computer
assisted
communication
was
used
by
two
persons
,
a
letter
board
by
one
and
'
ordinary
communication
'
by
one
.
There
is
a
need
for
follow-up
not
only
to
re
-assess
skills
and
needs
partly
owing
to
new
technologies
but
also
to
see
whether
the
person
needs
more
assistance
to
adapt
to
the
alternative
means
of
communication
or
whether
the
carers
of
the
person
need
extra
information
about
communication
.
We
conclude
that
the
low
incidence
of
the
syndrome
necessitates
a
skilled
team
in
which
different
professionals
can
together
assess
the
person
.
This
probably
requires
some
centralization
.
Diseases
Validation
Diseases presenting
"stroke"
symptom
acute rheumatic fever
adrenomyeloneuropathy
alexander disease
alpha-thalassemia
cadasil
cohen syndrome
dedifferentiated liposarcoma
fabry disease
heparin-induced thrombocytopenia
hereditary cerebral hemorrhage with amyloidosis
homocystinuria without methylmalonic aciduria
hydrocephalus with stenosis of the aqueduct of sylvius
kallmann syndrome
locked-in syndrome
malignant atrophic papulosis
neuralgic amyotrophy
sneddon syndrome
thoracic outlet syndrome
werner syndrome
zellweger syndrome
This symptom has already been validated
