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From armchair to wheelchair: how patients with a locked-in syndrome integrate bodily changes in experienced identity.
[locked-in syndrome]
Different
sort
of
people
are
interested
in
personal
identity
.
Philosophers
frequently
ask
what
it
takes
to
remain
oneself
.
Caregivers
imagine
their
patients
'
experience
.
But
both
philosophers
and
caregivers
think
from
the
armchair
:
they
can
only
make
assumptions
about
what
it
would
be
like
to
wake
up
with
massive
bodily
changes
.
Patients
with
a
locked-
in
syndrome
(
LIS
)
suffer
a
full
body
paralysis
without
cognitive
impairment
.
They
can
tell
us
what
it
is
like
.
Forty
-
four
chronic
LIS
patients
and
20
age-matched
healthy
medical
professionals
answered
a
15
-
items
questionnaire
targeting
:
(
A
)
global
evaluation
of
identity
,
(
B
)
body
representation
and
(
C
)
experienced
meaning
in
life
.
In
patients
,
self-reported
identity
was
correlated
with
B
and
C
.
Patients
differed
with
controls
in
C
.
These
results
suggest
that
the
paralyzed
body
remains
a
strong
component
of
patients
'
experienced
identity
,
that
patients
can
adjust
to
objectives
changes
perceived
as
meaningful
and
that
caregivers
fail
in
predicting
patients
'
experience
.
Diseases
Validation
Diseases presenting
"cognitive impairment"
symptom
22q11.2 deletion syndrome
cadasil
canavan disease
gm1 gangliosidosis
hereditary cerebral hemorrhage with amyloidosis
homocystinuria without methylmalonic aciduria
hydrocephalus with stenosis of the aqueduct of sylvius
kabuki syndrome
locked-in syndrome
phenylketonuria
sneddon syndrome
triple a syndrome
wolf-hirschhorn syndrome
This symptom has already been validated