The patient's journey: Living with locked-in syndrome
BMJ 2005; 331 doi: https://doi.org/10.1136/bmj.331.7508.94 (Published 07 July 2005) Cite this as: BMJ 2005;331:94
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This article may be of interest to Mr. Chisholm and his clinicians.
http://cordis.europa.eu/ictresults/index.cfm?section=news&tpl=article&Br...
Regards,
Sondra A. Balouris, MS, MPT
Instructor, University of Pittsburgh School of Health and Rehabilitation
Sciences
www.shrs.pitt.edu
Competing interests:
None declared
Competing interests: No competing interests
i have a client with locked in syndrome. am really working on him and
the client has already learnt to express yes or no with head nodding
movements and winking.i want to know in detail about the low blink system
and various other systems if available to maximise the potential of the
client. am a physiotherapist.
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want to know in detail about the low blink system and other system if available.
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Hello Nick
Thank you for your story.
Please don't give up and just say to yourself 'Listen to your heart'.
there is nothing else in the world anyone can do but listening to your
heart. We are one big family.
There is also a song by the band Roxette called 'Listen to your
heart' . Listen to it over and over again and it will make you feel
better.
Just do it,
All the best
Yours Holger
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I posted a few months ago about my 38 year old sister who was
diagnosed with Locked In Syndrome. I am happy to report that the doctors
in this case were mistaken, as she has begun to recover use of her limbs
and has even begun to talk again within the past week. We expect a long
road (possibly several years) for her recovery, but I think she will
reclaim many of her previously lost abilities with continued
rehabilitation work. I will continue to pray for everyone on this site who
has been touched by Locked In Syndrome and am hopeful that research will
continue for ways to help. Bless you all.
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None declared
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excellent source of information for locked-in patients
sorry re yr sister...
my husband has been locked in for 8 yrs now (since he was 38)
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The locked-in syndrome is more than just a brainstem stroke with
quadriplegia. The suffering and courage of locked-in patients has captured the
public’s imagination, because we can all identify with such patients. We realize
intuitively that the locked-in syndrome is a metaphor for the loneliness,
helplessness, and hopelessness of life. With few exceptions, we are all “locked-
in” bad jobs, bad relationships, bad marriages, and bad financial, legal, or
health problems. Let’s dedicate ourselves to finding the key to opening all
locked-in states.
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My 38-year old sister was just diagnosed with Locked-In Syndrome.
She, like Nick, has been a very active person and I'm looking for any
advice on how to help her at this time. I watched the movie "The Diving
Bell" a few months ago before any of this happened and was completely
amazed by the man's story. I'm amazed by Nick as well. I would definitely
be interested in receiving information about the low blink alphabet or any
other tools available for communication. My heart and prayers go out to
all who are living with Locked-In Syndrome and their caregivers too. We
all need patience and perserverence to help us communicate with one
another.
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After watching "The Diving Bell and the Butterfly", I created a low
blink system for communication using a set of zones navigated by
combinations of eye positions and eyelid movement.
The system you are using with the transparent board seems to be
getting at the same issue - speed.
What has to happen is computer recognition of eye position (up, mid,
down, right, center, left) and eyelid movement (rapid, single blink,
multiple blink and paused shut) - each unique combination representing a
letter AND the computer's ability to predict each word as it is being
built.
If my low blink system would be helpful - please let me know and I
will scan and send wherever - I have worked out the rules that govern the
system as well.
I feel for you and hope I can help - stay courageous.
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My husband suffered a basilar artery occlusion 3 months ago. He was
also diagnosed with Locked-In syndrome but is slowing coming out of it.
He has since regained movement of both arms and legs, with his left a
little stronger than his right. Doctors also told us he would probably
never come out of it. He is proving them wrong. We hope, with time and
alot of prayer, he will be able to overcome this syndrome. As you
mentioned, this is something we wouldn't wish upon anyone. Never give up.
God bless.
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Low-Cost Eye-Tracking Apparatus & Software
I heard about this software in an interview on National Public
Radio today--can't remember what show it was on, but Googled
it once I got home. It caught my attention because it
mentioned applications for helping people with Locked In
Syndrome. I hope it may be of help to some of you or your
loved ones affected by this disease. EyeWriter Initiative:
http://www.eyewriter.org/
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None declared
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