Transcript
====
hello
how are you so today we're going to uh
i'm going to bring up the different
stages of lewy body dementia i'm not
saying that we agree that there are
stages i've read things that says there
are and i've read things that says
there's not and
so we can't say
but anyway my name is madonna brown this
is hank brown we're both licensed
clinical mental health counselors
and hank started having symptoms of lewy
body dementia when he was age 46 and he
is age 56 now so we're just trying to
talk about some of the struggles we're
having with that and
so we're going to talk about that now
about the stages and stuff
so did you have something you want to
start out with with the stages hank that
you want to talk about or anything
not right off
okay no i don't okay so in the beginning
in uh when hank was 46 we started out
the first thing we noticed was
hank zero is conway twitty and he knows
all of his songs all the words i never
was good at remembering words to most
songs anyway i just knew the songs by
the sound
and we're coming home from kentucky with
our daughter jessica
and we were singing conway twitty songs
as soon as we started
hank could not remember the words and me
and jessica were singing and i thought
wow
i wonder what's happening he's not
remembering the words and he was driving
you know it's not like anything else was
going on he was driving and doing fine
and we were singing and then
so i tried to change it up to a song
that i knew he would know
of conway tweeties and i knew he would
know and it's like nope he could not
remember the words
and i remember it wasn't long after that
we were some horse and he started
tripping over do you remember that you
were tripping over in a mall in a mall
in raleigh yeah
you were what what did you do do you
remember that
kept tripping
yeah he was tripping over his
do you remember which leg it was which
foot
i don't remember when okay
so he was tripping over one of his feet
and i remember and he almost fell more
than once
and so that's when we kind of noticed
something was going on
and then those things would happen more
often and then nothing would happen and
then other things would happen then we'd
go the neurologist and they just
didn't know anything they would they did
uh what a spinal tap an mri all kinds of
blood work and they would even act like
we were lying and i'd go in so
heartbroken you know say hey you know
but you didn't know him before these
things are new this is not something
just just happened
that uh has always happened so anyway
we're going to go over the stages and
while we're just telling you this for
encouragement okay
the stages hank went through the later
stages some of them
first
and i know looking at hey now you would
not know
that he would have to stay at home from
work and i would say what did you do and
he just sat in a chair and then i got
scared to leave him at home now this is
in the very beginning
when he first started having symptoms
you had to i remember more of a flat
affect on your face just no emotions
he still has that and he still has the
grumpy face or whatever you want to call
it where he looks like he's mad
it looks like he's sad
and then he couldn't half walk
he had to use a cane
now this was in the beginning before he
even got a diagnosis
and we lived in one location and all
this was going on and then it went long
we moved to a different house
and then he had some of the same
symptoms i mean they just kept on and on
for like three years he just kept having
this today he couldn't function and that
would usually last two or three days and
then he would have to sleep a lot
so anyway it talks about and again i
don't know that stages are really true
or not i've seen where they are and then
i've seen studies say they're not says
starting out in stage one you have
normal behaviors stage two you have mild
changes
after hank could not remember the words
to conway twitter remember we sent you
to dr duncan in greenville the
psychologist oh yeah yeah
and he took a psychological eval and
ended up you had
mild cognitive decline
and that was in the very beginning and i
remember that day you got really
frustrated and was so anxious
and at that time hank was losing his
keys things like that
lots worse than that he was doing lots
of other stuff and he would say when he
was driving he couldn't tell
like how far away the car was
remember that night time was worse and
your hearing was getting worse yeah
everything was getting worse
that's true
and that was only what
six months in eight months in yeah
it's almost like you said everything
went backwards from me
than a lot of people
right
and it's just weird
now it says in stage two there are mild
changes such as some difficulty finding
words
okay you had that you still have that
don't you yeah okay
uh normal functioning in and outside of
the home i don't know that there's been
normal functioning
in a long time hazard
just normal what should be normal right
yeah it's
i mean it's better but yeah it's still
there what about finding the the words
eventually the right word
it usually comes to me but i gotta
you know really think about it and
okay get it
lodged in my head so see that's stage
two and i can see where you're having
some of those symptoms now
so stage three it says is mild changes
uh moments of forgetfulness yes you've
been having that the whole time
beginning to have problems at the
workplace yes you've been having that
ever since the very beginning trouble
paying attention from the very beginning
difficulty finding words and names very
beginning that's never stopped has it no
uh i think last week we were or this
week that we're in you were talking
about i remember their name
yeah i don't know it was a couple of
different things that happened and you
were saying once i was like i remembered
that and he was so excited that he could
remember their names and none of the
rest of us could but you did
trouble managing money and remembering
appointments now
since early on hank has not been able to
manage money because of the numbers and
he's not been able to remember
appointments i take care of all that
so stage three you've been going through
from the beginning
uh stage four
let's see for me forgetting familiar
names or items
bunch of times on that uh-huh i do add a
lot
forgetting where they placed important
items like their phone or watch
i do that you do
decrease knowledge of recent events
what was it increased knowledge
decreased knowledge of recent events
decreased knowledge
i seem like i'm doing a little better
sometimes yeah sometimes mistakes while
driving you just don't drive that much
we don't drive any difficulty problem
solving
you're definitely in that you can't do
that increased issues with money
management you just don't do that so and
daily tasks now it could be as if we're
talking about it i'm thinking maybe
the reason you're not having issues with
daily tasks because you do the same
thing every day
repetition right so it's not like we're
doing anything new for you to have an
issue with it's not like he's got a job
he's going out of the home and today he
couldn't do something
well so now we've got him in stage four
just so you know
and so he did get the mild cognitive uh
mild cognitive decline disorder
he did get that mild cognitive decline
uh from the psychologist but after that
he went back a year later and got
moderative cognitive decline
and we never did go back for the severe
we just didn't do that
all right so now we're on number five
stage five now remember hank is already
looks like in stage four
uh
it says personality changes in mood
swings now i just want you to know this
happened within the first six to eight
months
uh repeat same questions and thoughts he
did that back then
memory gaps
uh
knee and he had bladder problems back
then but you don't have those now uh
need a system while eating and using the
bathroom you've never needed that
assistance no
but do you do you think you have
personality changes in mood swings now
yeah
definitely i mean
and do you repeat questions or thoughts
all the time
you don't really seem too bad though
most of the time the
widen out though
here we go he just proved his point
i'll go back to sweden
that's really good that's my
repeat time questions or thoughts
oops so yeah he's got that one we don't
have to question it anymore
memory gaps
sometimes so now that's stage five he's
in stage five then all right stage six
strong mood swings and obvious
personality changes
strong mood swings and obvious
personality changes do you have that
well
just severe
i don't think i had this severe
well
yeah stage five was personality changes
and mood swings now it just says strong
mood swings
you know what i've noticed what i've
noticed that you have the strong mood
swings and personality changes if you
don't take your medication
yeah
if he wears his exelon patch and if he
takes his antidepressant
and he sees his new therapist for
counseling yes
all of that makes all the difference in
the world
madonna's not much on you telling her
that it can't happen and it can't be
this way and he's got louis body
dimension he's going to live two to five
years five to seven years five to seven
years and blah blah blah blah blah
that's what i heard i don't know you
remember on charlie brown where the
teacher said
wow
that's what i heard when that was
telling me all that
because my philosophy is
you don't know you tell me what you know
that's what's written in the studies and
i'm coming to you
for your professional
opinion
but when it comes down to it
we can take and we can look at stuff
and i know everybody does not believe in
god and we are fine with that you
believe in whatever you think you need
to but we believe in god
and i believe god can do anything and i
also believe
that we can research i believe there's
supplements i believe there's other ways
of doing things
and i don't believe that one size fits
all so madonna's not much on these
stages of lewy body
maybe they'll roll around and it'll
happen and if it does it does but if i
get locked in on hank is in stage five
oh my goodness he's only got two more to
go oh my goodness and it took him this
long to get here how many hours weeks
and days until you go through the next
one
i'm just not for that yeah
that's a good reason not to
do gloom and doom is that the word yeah
with about this stuff uh because i used
to really worry about it you know be
laying in bed oh my gosh what am i gonna
do you know
um
donald be by herself and
you know
all that but it seems like the longer i
go the better i'm getting right now i
that don't make sense right
but that's what it
it seems like
and these stages are good pointers to
things
but that's
little list is
nothing compared to you know
trying to think of a word
to me the list is good but it's nothing
compared to the reality of what's
happening if somebody says
that you cut the end of your finger off
and they sew it back on
it's going to take eight months i don't
know i'm just making this up okay it's
going to take eight months for
everything to start back working and
everything will be perfect
okay everybody's journey is different
everybody's experience is different
and to me in order for that finger to
grow properly doesn't only need to be
affected by all the physical things but
how positive are you in life how
stressful is life to you do you have
positive outlooks oh i know it's going
to work fine i'm good with it and you
think all that then the next thing you
know maybe it works great
maybe it takes a year and a half
maybe it only takes five months again
i'm just making this up now because i
don't have a clue how long it would take
but that's what i think about the stages
i want you to know
that just because there's a book about
it and just because a doctor or just
because a person's experience has
happened that way doesn't mean it's
going to happen that way for you
at all
i just don't believe in that one size
fits all ever i want to go by these
stages and look at the guidelines of
them i already looked at them and been
through them and in the beginning i
cried and i just cried oh my goodness
because hank was already at that time in
like stage five or six i mean right here
stage six what does it say
different eating habits yes he had that
getting lost yes he would get lost he
had bladder problems then difficulty
speaking in general yes lack of
awareness yes and delusions
this is stage six severe mental decline
and in the beginning of hank's disease
he was in stage six
i remember it the first time it happened
we were sitting at a restaurant there
was one two three four five six of us
and i was at one end of the table and
hank was at the other end and i said
hank
what do you want to eat
and he just stared into space
hank and he's just staring into space
and everybody's looking at me and then
they're looking at him and i said hank
and it took like four to five times
to say your name until you said what
so he was in lack of awareness a long
time back then
now
that very seldom ever happens
delusions don't happen
difficulty speaking don't happen i mean
in general you you
sometimes i mean you can't always find
the words i'm not saying that you don't
have bladder problems
uh i'm not saying he wouldn't get lost i
don't know
i mean he don't get lost in walmart and
lows and things like that
different eating habits
uh that happens sometimes he wants to
eat you eat a lot and you're really
hungry and other times you're not
all right so let's get on down to stage
seven
here we go
loss of ability to eat no
swallowing or loss of ability to speak
that's not happening is it
not able to use a bathroom without
assistance
no muscle control
always disoriented no
loss of bowel or bladder control no
may need to stay in the bed constantly
no
no so really hank when i look at these
different stages hank was in stage six
in the beginning
and again we're telling you guys guys
these things because we want to be an
encouragement to you
in a positive way
now maybe your loved one is in stage
seven okay
and if you see it going downhill to that
i'm already thinking if he was in stage
seven you know how long will it last
it may not last long but who knows they
told me in the beginning
that you know read this and hank's going
to die in this amount of time they
didn't tell me that but i read it
oh yeah they gave you a book they did
yeah they read it too the neurologist
gave me a book that one of his clients
had louis body dimension his wife had
written a book
and he gave it to me told me to read it
after three chapters i quit because all
i did was cry when i read it and i kept
thinking oh my goodness this is awful
and oh my goodness this is how it's
going to be and all it did was think
about how it was going to be and it's
like
it's not been like that
our life has not been like their life
i don't know why i don't know if it's
hank's medication or what
parkinson's symptoms
hank had to use a cane
he's had to use a cane so many times
we parked one day at our office in north
carolina and jessica said daddy fell out
of the truck i was driving i had parked
and
he opened his door and just fell out on
the pavement
yeah i remember that we've not had
anything like that to happen in a long
time so years uh but you didn't have to
use a cane for a while but you'd i mean
probably in the last year and a half he
had to use a cane but
he don't have those issues now he don't
trip over either one of his feet he
don't use a cane
what else has changed for you
i don't know
can you think of anything well i'm
thinking your sleep is not you're not
restless in your sleep all the time yeah
sleeping better
i mean you still talk in your sleep
sometimes but you don't act out
you know going to the delusions or
anything in the middle of the night now
uh
he's going for a
sleep study
and we thought maybe that could help
with his energy in the day but you don't
really now even lately you've not been
taking that many naps he did sunday
uh from being really tired but
so
again
we just want to encourage you guys to
let you know don't read about all this
stuff and think it is written in stone
read for information but remember
you and your loved one
are different people
and we don't know how you're genetically
made up
what's going on what's happening
we don't know
i was reading about some lewy body
dementia patients that passed away and
they found nematodes in their brain
which means that it was something about
the nematodes or or something about a
worm that comes from tick bites
so
you know was it really lewy body
dementia
was it something to do with that
we don't know
is it where you live in the world that
causes it to get you know greater is it
concussions hank had concussions we
don't know and the other thing that
so-called experts don't know either
right not always
they have great information you know
yeah they still
you know
medicines and
taking care of you but
you just don't know what your body's
gonna do
exactly
and um
do you have any other words of
encouragement for everybody
well kind like i always say um
just
keep hanging on
um
if what you're doing is working right
now
you know keep going with it and
if you see some changes or something it
might be time to you know
you know
find out what maybe that would be
um
you know things like that
but as you've seen with those uh all
those different
orders of things
none of it you know
is 100 percent proof of right what's
going to happen so
i i quit worrying about it
years ago after we realized this you
know that my body's telling me what i
i'm doing a lot a lot of days you know
he'll tell me hey you're sleeping today
or
you know
you're feeling great you can go with the
you know them to the movies and and
everything so
so just don't give up hope right i agree
hope is one of the best things we got
the only thing greater than fear is hope
i got that in the comment it was from
jay bird and that's our youngest
daughter and she commented that on one
of my videos
on our videos i don't think it was just
mine but yeah that's what she said she
also corrected us in another video about
our restaurant she says i wasn't six i
was 10 or 11 and i said that's funny you
seemed a lot younger so so yeah so she's
on there correcting us so she's paying
attention
but yeah we just we just always want you
guys to have as much hope we i want to
instill hope in you and i can tell you
trying to give you guys hope helps me to
have more hope because i have something
to look forward to now that it's not
just me and anchor on this journey alone
we're on this journey with all you guys
yeah
and we want to hear from you when we do
uh
if it's just a little
message at the bottom down there or you
want to write a book that's right we
would love to hear it uh
here's some of your stories uh
you know we may not be able to get to
everyone but you know we'd love to
uh right now we're getting everyone yeah
i try to give something a thumbs up a
hard i try to do something if i can't if
i can't respond with a big lengthy thing
i try to to respond to everyone because
that's like a big thank you
yeah it is
so we'd like it if you subscribe to our
channel we'd appreciate that you know
give us the thumbs up if you like the
video and hit the little notification so
you can you know get a new video when it
comes out it just it just helps us so
much to know that you guys are watching
the videos
and i've got a video
uh from years ago when hank was just
before he ever got diagnosed and we were
at our office one day uh working and
i've got to play it for hank to see if
he's okay if i put it out there and i
can tell you now when you if he lets me
he looks like he's drunk sitting in a an
office chair at our office and i'm
talking to him trying to get him to go
home
so i don't know if he's gonna let me put
it out and again he's going to have to
watch it to make sure he's okay with you
guys seeing all that but you will be
amazed at how sick was back then
compared to now to me it looks like the
end stages back then
so we had lost a lot of hope back then i
had lost in the beginning i lost all
hope
but here we are
and if anything happens to me or hank
either one tomorrow we've had a great 25
years together and as our as the oldest
daughter whitney says she says mama be
appreciative of what you have because
not everybody finds a love like you and
hank how
and that's what she always tells me to
hold on to
so i try to hold on to what whitney says
that we have had a great love for 20
going on 26 years
and uh i'm so thankful that we found
that found one another
all right so if you need anything
questions comments please hit the
subscribe button and we will talk to you
next time bye
===
<루이소체 치매의 단계 - 행크는 어떤 단계를 겪고 있는가?> 요약 및 평론
1. 요약
본 영상은 루이소체 치매(Lewy Body Dementia) 진단을 받은 행크(Hank)와 그의 아내이자 공동 상담사인 마돈나(Madonna)가 치매의 단계별 증상과 자신들의 실제 경험을 비교하며 나눈 대화를 담고 있다.
발병 및 초기의 이상 증상
행크는 46세라는 비교적 젊은 나이에 증상이 시작되었다. 아는 노래의 가사를 기억하지 못하거나, 발이 걸려 넘어지고, 표정이 없어지는(flat affect) 등의 변화가 나타났다. 초기 검사에서 경도인지장애 진단을 받았으나, 정작 병의 극초기(발병 6~8개월 차)에 중증 단계에 해당하는 심각한 증상들을 집중적으로 겪었다.
단계별 기준과 행크의 실제 상태 비교
초기 단계 (1~3단계): 단어 찾기의 어려움, 물건이나 일정 잊기, 돈 관리 및 문제 해결 능력 저하 등 일반적인 경도 이상 증상들이 포함된다. 행크는 병의 시작부터 이러한 증상들을 지속적으로 겪어왔다.
중기 단계 (4~5단계): 운전 미숙, 반복적인 질문, 감정 변화 및 수면 장애 등이 나타난다. 약물 치료(엑설론 패치, 항우울제)와 상담을 지속하면서 현재는 4~5단계 수준의 안정된 상태를 유지하고 있다.
고도 및 중증 단계 (6~7단계): 환각, 심각한 수면 장애, 인지 부재, 보행 장애, 섭식 및 배설 장애 등이 해당된다. 행크는 오히려 병의 초기에 인지 불능, 환각, 지팡이 없이는 걷지 못하는 중증(6단계) 증상을 보였으나, 현재는 이러한 심각한 증상들이 거의 사라졌거나 현저히 개선되었다.
영상 메시지
의학 서적이나 의사가 제시하는 단계별 진행 과정 및 여명 예측이 모든 환자에게 절대적으로 적용되는 것은 아니다. 환자 개개인의 환경, 긍정적인 마음가짐, 적절한 약물 치료 및 희망을 잃지 않는 태도가 병의 경과에 큰 영향을 미칠 수 있음을 강조한다.
2. 평론
이 영상은 교과서적인 의학 지식과 실제 투병 현장 간의 갭을 지극히 인간적이고 사실적인 시선으로 조명한다.
첫째, 치매 진행의 비선형성(Non-linearity)에 대한 생생한 증언이다. 흔히 치매는 1단계부터 7단계까지 순차적으로 악화되는 질환으로 인식되지만, 행크의 사례는 초기에 6단계 수준의 중증 증상이 나타났다가 적절한 치료와 관리로 다시 4~5단계 수준으로 회복될 수 있음을 보여준다. 이는 정형화된 단계론이 환자와 보호자에게 줄 수 있는 절망감을 경계하게 만든다.
둘째, 보호자 및 환자의 심리적 태도와 약물 관리의 중요성을 부각한다. 마돈나는 통계적 수치나 시한부 선언에 갇히지 않고, 일상의 삶을 긍정적으로 유지하려는 태도를 견지한다. 동시에 엑설론 패치나 항우울제 등 과학적·의학적 처방을 충실히 이행함으로써 상태 악화를 막는 실용적인 균형을 보여준다.
결론적으로 이 영상은 루이소체 치매를 겪는 다른 환자와 가족들에게 통계적 진단명이 주는 공포에서 벗어나 <오늘 하루의 삶과 희망>에 집중할 수 있도록 돕는 실질적인 위로와 가이드를 제공한다.
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<레비소체 치매의 단계 — 행크는 어느 단계에 있는가?>
<The Stages of Lewy Body Dementia – Which Stage is Hank experiencing?>
Life Recovery Services PLLC, 2022 — 요약·평론
이 자료는 의학 논문이나 전문의 강의가 아니라, 레비소체 치매(Lewy Body Dementia, LBD)를 앓는 행크 브라운(Hank Brown)과 아내 마돈나 브라운(Madonna Brown)이 자신들의 약 10년에 걸친 경험을 이야기한 유튜브 영상의 녹취록이다. 두 사람은 모두 임상 정신건강 상담사이지만 신경과 전문의는 아니다. 따라서 이 자료의 가장 큰 가치는 <레비소체 치매가 실제 생활에서 얼마나 불규칙하게 나타나는가>를 보여주는 데 있고, 반대로 가장 큰 약점은 <7단계라는 틀을 LBD의 의학적 진행단계처럼 사용한다는 점>에 있다.
1. 시작은 아주 작은 이상이었다
행크는 46세 무렵부터 증상이 시작되었다. 가장 먼저 가족이 알아챈 것은 놀랍게도 기억력 검사나 직장 문제가 아니라 <노래 가사를 잊어버린 것>이었다. 행크는 Conway Twitty의 노래를 매우 좋아해서 거의 모든 노래의 가사를 외우고 있었는데, 자동차 안에서 가족과 노래를 부르다가 갑자기 익숙한 노래의 가사를 기억하지 못했다.
곧 신체 증상도 나타났다. 한쪽 발이 걸려 자주 넘어질 뻔했고, 보행이 어려워져 지팡이를 사용했다. 얼굴 표정이 줄어들어 화가 났거나 우울한 사람처럼 보이는 이른바 ‘flat affect’도 나타났다. 어떤 날에는 직장에 나갈 수 없을 정도로 기능이 떨어져 의자에 하루 종일 앉아 있기도 했다. 그런데 며칠 지나면 다시 상당히 좋아졌다.
병원에서는 MRI, 척수검사, 혈액검사 등 여러 검사를 했지만 초기에는 원인을 찾지 못했다. 심리검사에서는 처음에 <mild cognitive decline>이 나왔고, 약 1년 뒤에는 <moderate cognitive decline>으로 평가되었다. 운전할 때 앞차와의 거리를 판단하기 어렵고, 단어가 잘 떠오르지 않으며, 열쇠나 물건을 잃고, 돈과 약속을 관리하는 능력도 떨어졌다.
2. 그런데 행크의 병은 ‘단계대로’ 가지 않았다
이 영상의 핵심은 여기서 시작한다.
마돈나는 치매를 1~7단계로 설명한 목록을 가져와 행크와 하나씩 비교한다. 대략 다음과 같다.
1단계는 정상 기능, 2단계는 아주 가벼운 단어 찾기나 기억 문제, 3단계는 직장·주의력·약속·재정관리 문제가 나타나는 경도 인지저하, 4단계는 익숙한 이름이나 물건을 잊고 중요한 물건을 잃어버리며 문제해결 능력이 떨어지는 중등도 저하, 5단계는 반복 질문·기억 공백·성격 및 기분 변화가 뚜렷해지고, 6단계는 길을 잃거나 배뇨 문제, 식사 변화, 언어장애, 심한 성격 변화와 인식장애가 나타나며, 7단계는 말하기·삼키기·화장실 사용·근육 조절 능력 등을 잃고 거의 전적인 돌봄이 필요한 상태로 묘사한다.
문제는 행크가 이 순서를 따르지 않았다는 것이다.
병이 시작된 초기 몇 년 동안 행크에게는 오히려 ‘6단계’라고 적힌 증상들이 여럿 나타났다. 식사가 갑자기 달라지고, 길을 잃고, 방광 문제가 생기고, 말하기가 어려워지며, 주변 상황에 대한 인식이 사라지는 순간도 있었다.
한 번은 가족과 식당에 앉아 있는데 행크가 허공만 바라보며 전혀 반응하지 않았다. 아내가 네댓 번 이름을 불러야 겨우 정신을 차렸다. 초기에는 지팡이가 필요할 정도로 걷기가 어려웠고 차에서 내리다 그대로 바닥에 쓰러진 적도 있었다.
그런데 영상 촬영 당시에는 이런 증상의 상당 부분이 사라져 있었다. 행크는 지팡이를 쓰지 않고, 발이 걸려 넘어지는 일도 크게 줄었으며, 밤에 이상행동을 하는 일도 줄었다. 어떤 인지기능은 오히려 예전보다 좋아진 것처럼 보였다.
그래서 마돈나가 목록대로 평가하면 놀라운 결론이 나온다.
<“처음에는 6단계처럼 보였는데, 지금은 오히려 4~5단계쯤이다.”>
바로 이 모순 때문에 두 사람은 ‘stage’라는 말 자체를 점점 의심하게 된다.
3. 이 영상에서 가장 중요한 통찰: <단계를 시계처럼 생각하지 말라>
마돈나는 처음에는 이런 단계표를 읽으며 크게 절망했다고 말한다. “행크가 벌써 5단계라면 앞으로 두 단계밖에 남지 않았나?”, “그러면 몇 달 뒤에는 6단계가 되고 얼마 뒤에는 죽는 것인가?”라고 생각했다.
신경과에서 받은 책 역시 비슷한 공포를 일으켰다. 세 장 정도 읽다가 울기만 해서 결국 책을 덮었다.
그러나 여러 해를 살아본 뒤 생각이 바뀌었다.
<단계는 앞으로 일어날 일을 예언하는 시간표가 아니라, 현재 나타나는 현상을 이해하는 참고표일 뿐이라는 것이다.>
“다른 사람이 그렇게 진행했다고 해서 당신도 그렇게 진행된다는 뜻은 아니다.”
“Everybody’s journey is different.”
이것이 영상 전체를 관통하는 메시지다.
이 부분은 LBD의 실제 임상적 특징과 상당히 잘 맞는다. DLB 국제 컨소시엄은 <인지의 현저한 변동>, 반복되는 시각적 환각, 파킨슨증, REM 수면행동장애 등을 핵심 임상 특징으로 본다. 즉 LBD에서는 하루 중에도, 며칠 사이에도 기능 상태가 크게 달라지는 현상 자체가 질병의 중요한 특징이다.
장기 추적 연구에서도 LBD의 여러 증상과 일상기능 저하는 반드시 같은 속도로 평행하게 진행하지 않는다. 따라서 특정 증상 하나를 보고 전체 질환을 단일한 ‘몇 단계’로 표시하는 것은 상당한 정보를 잃게 만든다.
4. 그러나 영상의 <7단계>에는 중요한 문제가 있다
여기서는 영상의 메시지와 영상이 사용하는 도구를 분리해야 한다.
행크 부부가 사용하는 1~7단계 분류는 LBD를 위해 만들어진 공식적 ‘레비소체 치매 7단계’가 아니다. 내용상 Barry Reisberg 등이 1982년에 제안한 <Global Deterioration Scale, GDS>와 매우 흡사하다. GDS는 ‘primary degenerative dementia’를 인지저하 정도에 따라 일곱 단계로 구분하기 위해 만들어진 척도이며, 특히 알츠하이머형 치매의 진행을 설명하는 데 널리 사용되어 왔다.
반면 국제적인 DLB 진단기준은 LBD를 1~7단계로 나누지 않는다. 오히려 인지 변동, 시각 환각, 파킨슨증, REM 수면행동장애와 여러 보조 증상 및 바이오마커를 조합하여 진단한다.
더구나 2020년의 <전구기(prodromal) DLB> 연구기준은 치매에 이르기 전부터 LBD가 매우 다양한 모습으로 시작할 수 있다고 본다. 대표적으로 <MCI형>, <섬망(delirium) 시작형>, <정신과적 증상 시작형>을 구별한다.
따라서 “환각이나 심한 정신증상이 있으면 말기”, “보행장애가 심하면 6단계”라고 단순화하면 LBD에서는 크게 잘못 판단할 수 있다.
오히려 이 영상에서 행크 자신이 그 오류를 훌륭하게 입증하고 있는 셈이다.
<초기에 ‘6단계 증상’이 있었는데 10년 뒤 ‘4단계’처럼 보인다는 사실은 LBD가 거꾸로 나았다는 뜻이라기보다, 그 7단계 척도가 LBD의 진행을 제대로 표현하지 못한다는 뜻에 더 가깝다.>
5. ‘좋아졌다’는 표현도 조심해서 읽어야 한다
행크는 실제로 상당히 좋아진 부분이 있다. 지팡이를 쓰지 않게 되었고, 수면도 좋아졌으며, 혼란이나 이상행동도 줄었다고 한다. Exelon(rivastigmine) 패치, 항우울제, 상담 등이 도움이 되었다고 부부는 느낀다.
그러나 이것은 <LBD 자체가 역전되었다>는 증거는 아니다.
LBD에서는 증상의 변동이 크고, 약물·수면·환경·스트레스·신체 상태에 따라 기능이 상당히 달라질 수 있다. 따라서 신경퇴행성 질환 전체는 진행하면서도 특정 증상은 몇 달 또는 몇 년 동안 좋아지거나 사라질 수 있다. 이 두 현상은 모순되지 않는다.
영상 자체도 이 점에서는 상당히 신중하다. 마돈나는 “약 때문인지 무엇 때문인지 모르겠다”고 여러 번 인정한다. 이것은 좋은 태도다.
6. 가장 문제가 되는 부분: 근거와 추측의 경계가 흐려진다
후반부에서는 영상의 신뢰도가 상당히 떨어진다.
마돈나는 LBD로 사망한 사람의 뇌에서 선충(nematode)이 발견되었다는 이야기를 읽었다면서 진드기(tick bite), 기생충, 지역 환경 등이 LBD와 관계있는 것이 아닌지 추측한다. 또 supplements와 여러 대체적 가능성도 언급한다.
하지만 영상에는 이를 뒷받침하는 연구자료가 제시되지 않는다. 현재의 DLB 국제 진단·연구 틀에서 ‘뇌의 기생충이나 진드기 감염’은 LBD의 확립된 원인으로 다루어지지 않는다.
종교적 신념에 대해서도 같은 구분이 필요하다. 마돈나에게 “God can do anything”이라는 믿음은 돌봄을 견디게 해주는 심리적 자원으로서 충분히 의미가 있다. 그러나 그것을 의학적 인과관계나 치료 효과의 근거와 섞어서는 안 된다.
이 영상의 <경험담>은 귀중하지만 <병인론>은 신뢰해서는 안 되는 이유다.
7. 죽음과 예후에 관한 태도는 오히려 매우 건강하다
두 사람은 “2~5년”, “5~7년” 같은 생존기간 이야기에 집착하지 말라고 한다. 자신들도 처음에는 이런 숫자를 읽고 절망했지만, 결국 그 숫자가 한 개인의 남은 시간을 예언하지 못한다는 것을 깨달았다고 말한다.
실제 연구에서도 DLB 진단 후 생존기간은 집단 평균이나 중앙값으로 제시될 뿐 개인 예측치는 아니다. 연구집단에 따라 중앙 생존기간이 다르고, 연령·기능 상태·영양 상태·동반질환 등에 따라 예후가 크게 달라진다.
따라서 “5단계니까 몇 년 남았다”는 식의 계산에는 의학적 근거가 없다.
이 영상이 전달하는 “오늘 가능한 일을 하고, 지금 잘 되는 것이 있으면 계속하고, 변화가 생기면 다시 조정하라”는 태도는 오히려 실용적인 돌봄 철학이다.
평론
이 영상은 <나쁜 의학 강의이지만 좋은 LBD 체험기>라고 평가할 수 있다.
의학 자료로 보면 결함이 분명하다. 가장 큰 문제는 알츠하이머병 중심으로 만들어진 7단계형 사고를 LBD에 적용한 것이다. 더욱이 기생충, 진드기, supplements 등 근거가 불분명한 추측까지 등장한다.
그러나 역설적으로 영상의 내용 자체가 그 7단계 이론의 한계를 매우 생생하게 보여준다.
행크는 초기부터 보행장애, 심한 인지 변동, 무반응 상태, 배뇨 문제 등 ‘고단계’로 분류될 증상을 보였다. 그런데 10년 뒤에는 그중 상당수가 호전되었다. 다른 기능은 계속 손상되어 있다. 즉 LBD에서는 인지, 운동, 수면, 정신증상, 자율신경 기능이 <하나의 계단을 함께 내려가는 것이 아니다>.
이것이 이 자료에서 가장 중요하게 건질 부분이다.
따라서 LBD를 이해할 때는
<“지금 몇 단계인가?”>
보다
<“어떤 기능이 현재 어느 정도 손상되어 있으며, 지난 3~6개월 동안 각각 어떻게 변했는가?”>
라고 묻는 편이 훨씬 유용하다.
정순님의 경우에도 이 영상의 ‘4단계인가 5단계인가’ 같은 분류에 끼워 맞추는 것은 별 도움이 되지 않는다.
오히려 <① 일상생활 기능, ② 인지 변동, ③ 환시·오인, ④ 보행·균형과 파킨슨 증상, ⑤ 수면, ⑥ 자율신경 증상, ⑦ 약물에 따른 변화>를 각각 따로 기록해 보는 것이 LBD의 실제 모습을 훨씬 정확하게 보여준다. DLB의 핵심 특징 자체가 이렇게 여러 영역으로 나뉘어 있기 때문이다.
결국 이 영상의 제목인 <“행크는 어느 단계인가?”>에 대한 가장 좋은 답은 뜻밖에도 다음과 같다.
<행크에게 한 개의 ‘단계’를 붙이는 것 자체가 그다지 좋은 질문이 아니다.>
그리고 바로 그 점을 행크 부부 자신의 10년 경험이 가장 설득력 있게 보여주고 있다.
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