“AM I LOCKED-IN?” ILLNESS TRAJECTORIES AND THE EXPERIENCE OF
LOCKED-IN SYNDROME IN JAPAN AND EUROPEYUKIKO

1,2,3HIMENO,LINA

4MASANA ,YUMIKO

2,3KAWAGUCHI ,TATSUYA

2,5MIMA ,FERNANDO

4,6VIDAL

1 COLLEGEOF LIFE SCIENCES, RITSUMEIKAN UNIVERSITY, 2 INSTITUTE OF ARS VIVENDI, RITSUMEIKAN UNIVERSITY,3 ALS/MND SUPPORT CENTER SAKURAKAI, 4 DEPARTMENT OF ANTHROPOLOGY, PHYLOSOPHY AND SOCIAL WORK (DAFITS), ROVIRA I VIRGILI UNIVERSITY, 5 GRADUATE SCHOOL OF CORE ETHICSAND FRONTIER SCIENCES, RITSUMEIKAN UNIVERSITY, 6 CATALAN INSTITUTION FOR RESEARCH AND ADVANCED STUDIES(ICREA)

GENERAL GOAL: To understand the lived experience of persons with locked-in syndrome (PwLIS) ina qualitative and cross-cultural perspective.
REPORTED HERE: Do PwLIS recognize themselves in the official name of the diagnosis and in the image ofPwLIS as a “mind trapped in a body”?

Methods

Japan: Open-ended on-line questionnaires. Participants were recruited using the snowball
sampling method through SNS such as Facebook.
France: Testimonies by members of the French Locked-in Syndrome Association (ALIS)

Spain: Testimonies by participants in the project Anthropology and Phenomenology of theLocked-in Syndrome.

Some examples“What do you think about the official name of thediagnosis (Locked-In Syndrome)?”Participants

Japan(n=18) France(11) Spain(5)Age
47.9±9.752.1±10.0 61.2±11.1
10517(Average±SD) Answered
1
10
No answer
1463
GenderMale
452Female
2
Classical
10
LIS category
9
Incomplete
70
Complete0101
Recovered
9
Cause of LIS
Vascular2
Non-vascular
216

Recognition of the term “locked-in syndrome(LIS)” in Japan
Vascular(n=2)

Did you know thename "locked-insyndrome (LIS)"?
Do you think yourphysical condition
is LIS?

Yes
NoNo answer

Yes
NoNo answer

What do you think
No objection
about the officialname of the
Discomfort
diagnosis(Locked-InNo answerSyndrome)?

CONCLUSIONS

200
200

Non-vascular(n=16)

(n=2)

10
51
5
92(n=15)2400101• In contrast to European PwLIS (due to stroke), JapanesePwLIS (due to ALS) tend not to recognize themselves as“locked-in syndrome.”• European PwLIS considered “LIS” as an adequate namefor their condition, and recognized themselves more in
the image of PwLIS as “minds trapped in a body.”• Although we could not engage in cross-culturalcomparison, the divergence corresponded to a crucial
difference in participants’ illness trajectories: sudden vsgradual entrance in the locked-in state, respectively for
PwLIS due to stroke and PwLIS due to ALS.
Funding: The Society-with-Coronavirus Research Program ofRitsumeikan University and JSPS KAKENHI JP19K21620 to T.M. Grant
PID2019-106723GB-100 of the Spanish Ministry of Science andInnovation to F.V.

Introductory movie
YouTube content of theWorkshop on PwLIS• I think it’s good to be defined [by medicalprofessionals] as a case. However, I also
want [them] to spread the fact that it ispossible to keep persons in an unlocked
situation by using technology.
• I feel that this name was given thinking
only about the negative aspects. But if I
werehealthy,
I
wouldn’tfeelCommunication using
uncomfortableabout
thisname.
mouth alphabet.

• It is a dangerous expression that can lead to the negativemisconception that all ALS patients become LIS.
• It is laziness, ignorance and arrogance on the part of healthcare
professionals.

•••
•
•

I don't care, it's just a name
Corresponds well to the difficulties
Defines reality fairly well.
It sums up the reality of what we go through.
It's a good name, even if having a means of communicationmeans you're not so locked in...
• This name is adapted to the disability, but only for the first few
years.

“Sometimes people with LIS are described as ‘amind trapped in a body.’ What do you think aboutit? Why?”• Even if I can’t speak, I can communicate my intentions
through mouth alphabet [a system akin to the alphabet
board used in combination with blinking] andcommunication devices, so I don’t think my mind istrapped in my body.

• 100% accurate. The moment I have thecommunication software on the PC, I escapefrom captivity.”• [agree] because having a perfect head and a paralyzed bodymakes you feel like that, like a caged lion.
• [during the first four months, was “a prisoner” of his body]but from the moment I started to move (minimally) my toes,I felt that everything was going to change. Little by little, I
stopped being a prisoner.

•••

REFERENCES:
Yumiko Kawaguchi, Impact of the Japanese Disability Homecare System on ALS
Patients’ Decision to Receive Tracheostomy with Invasive Ventilation,
Neuroethics, 2020, 13:239-247.
Yasuhiko Murakami, Phenomenological Analysis of a Japanese Professional
Caregiver Specialized in Patients with Amyotrophic Lateral Sclerosis, Neuroethics,
2020, 13:181-191.
Yukiko Himeno, Osamu Inoue, Fernando Vidal, The ‘Way of Flowers’ and the Careof Patients with Amyotrophic Lateral Sclerosis in Japan, Arxiu d’Etnografia deCatalunya, n.º 21, 2020, 37-68 | DOI: 10.17345/aec21.37-68.