Talk:Locked-in syndrome

message: I remember the old (black & white) Twilight Zone had an episode where a guy is in a car accident and can only move his finger and tries valiantly to let people know he is only paralyzed, not dead (we get an internal monologue from him).
Anybody remember the episode name or when it came out? Thanks.  —Preceding unsigned comment added by 68.53.60.87 (talk) 01:43, 2 December 2009 (UTC)
replies: text: See List of Alfred Hitchcock Presents episodes - Original is S01E07 "Breakdown" he can cry, in re-make 1985 s01e09 he can move his finger.--RicHard-59 (talk) 00:50, 16 October 2015 (UTC)
thread_title: Twilight Zone Episode?

message: There's an apparent contradiction in this article:
"those who are locked-in have no bodily feeling"
"they can still feel sensations"
So which is it? --Delldot 17:02, 25 October 2005 (UTC)
replies: text: I changed the text to reflect what the majority of the article states and what seems most logical. Assumably, because they DO maintain the feeling of touch, pain, and the location of their limbs, there is no state of panic -- unlike paralysis which inherently includes an abnormal sensation in the affected locations. --Wolf530 01:16, 13 September 2006 (UTC)
thread_title: Contradiction

message: The are 3 different styles used on the article, 'Locked-In syndrome', 'Locked-In Syndrome' and 'locked-in syndrome', is there a "correct" one to use, or should one be picked and used continuously? Jariola 10:53, 8 June 2007 (UTC)
replies: text: Good eye.  I also thought something was strange when i searched for 'locked-in syndrome' and noticed that i was redirected from 'Locked-in syndrome' to 'Locked-In syndrome'.  Anyway, i looked it up on UpToDate and a quick MEDLINE search.  Most call it 'locked-in syndrome' or 'LIS'.  Some call it 'the locked-in syndrome'.  a few call it 'Locked-In Syndrome'.  My judgement: it should not be capitalized.  And since this doesn't seem to be a very hot topic (last post: June 2007), i'm going to go ahead and make the changes.--Jmjanzen (talk) 16:26, 25 April 2008 (UTC)
replies: text: I've performed the move with help from an admin, as well as fixed the capitalisation on the page (amongst other fixes). Where next Columbus? (talk)  —Preceding undated comment added 15:53, 7 March 2009 (UTC)
thread_title: Capitalization

message: Given that this video contains clips of the film Johnny Got His Gun - to which Metallica bought the rights - which is not about Locked-In syndrome, but disability due to loss of limbs and other damage caused in battle, I don't think it is appropriate to suggest One is a cultural reference. There may be some way to relate Johnny Got His Gun to The Diving Bell and the Butterfly.
--65.95.69.219 03:46, 31 July 2007 (UTC)
replies: text: I agree, it should be removed. He is not paralysed at all, but has lost all his limbs.  —Preceding unsigned comment added by 213.131.154.41 (talk) 07:00, 18 January 2008 (UTC)
replies: text: It was my understanding that the subject of the video/song One was unable to see, speak, hear, or feel (by touch) and had lost all limbs.  So I was under the impression that his condition went beyond Locked-In Syndrome by also being unable to experience the outside world at all.  I don't insist on this, but it was my understanding.  Dachande (talk) 18:11, 29 July 2008 (UTC)

text:  I added the JGHG reference to the bit about "one" before I checked this TALK page ... It's really "you're not locked-in to your body, your body's been destroyed, tough luck" syndrome. List the Metallica song or not, but you need to leave in the JGHG reference. Perhaps start a list/section for "popular references which are not actually locked-in" to keep people from adding it over and over again.  —Preceding unsigned comment added by 75.50.58.90 (talk) 13:38, 23 November 2009 (UTC)
replies: text: I removed the section, as it's evidently not pertinent. rone (talk) 06:38, 26 July 2010 (UTC)
thread_title:  Metallica "One" video 

message: http://news.bbc.co.uk/1/hi/health/7094526.stm 86.132.138.84 04:30, 15 November 2007 (UTC)
thread_title:  BBC article on this 

message: In the introduction, it says that locked-in syndrome is sometimes called "maladie de l'emmuré vivant" in French, and a rough translation is given. On the other hand, it also states that is is sometimes called "Eingeschlossensein" in German, but no translation is given. Is it any more obvious what "Eingeschlossensein" is supposed to mean compared to "la maladie du truc whatever"?
Basically, wouldn't it be possible to give a translation of the German thingy as well?
By the way, the reference given doesn't mention the German thing anywhere (I haven't looked for the French version, but the French wikipedia article for Locked-in syndrome doesn't mention it either... the only place I've seen it is from a book where the author calls himself an emmuré vivant, which might as well be a metaphor more than anything else).
So really, to sum up: there should have clearer sources for both the French and German alternate names for locked-in syndrome, and a translation for the German word wouldn't be so bad.
Seigneur101 (talk) 15:58, 7 May 2009 (UTC)
replies: text: Probably the reason why it isn't translated is it means the exact same thing as the English name. Eingeschlossen = locked in, sein = to be; eingeschlossensein = to be locked-in, to be in a locked-in state. -- Dandelions (talk) 19:20, 3 September 2009 (UTC)
thread_title: Maladie de l'emmuré vivant vs. Eingeschlossensein

message: I am interested because I have a friend who is in a semi locked-in state and is undergoing extensive therapy - writing, walking, speech, horseback riding, upper body strengthening workouts etc. But the most unbelieveable therapy is "frindship attendance therapy" for want of a better name. 
He is visited by friends who interact with him intensively daily by speaking with him, hugging him, praying with him and for him and he is responding to this extremely well. His wife is tireless in her marshalling of this effort. We believe strongly that he will recover greatly from his conditition. Indeed, he has already made amazing progress. 
Please let me know of your experiences with any of these or other influencing therapies and share your stories of positive advances in and with untradtionional therapies such as brain stem regeneration through adult stem cell therapy or electronic or vibratory brain stem therapies. I would appreciate anything you can give me. 
Please email to Parcmon through Wikipedia.
Parcmon  —Preceding unsigned comment added by Parcmon (talk • contribs) 14:58, 11 May 2009 (UTC)
thread_title:  Restorative therapy 

message: Does anyone else think a link to the anesthesia awareness article in See Also might be appropriate?  It seems like a variation on the same type of situation (physically paralyzed while more or less conscious).  I have mentioned this on the anesthesia awareness talk page too.
128.135.121.235 (talk) 21:42, 26 May 2009 (UTC)
thread_title:  anesthesia awareness 

message: Gary Griffin became immobile due to Amyotrophic Lateral Sclerosis, so why put his story in the context of the locked-in syndrome? I think the subsection concerning him should be removed.
Silviakuna (talk) 12:17, 18 June 2009 (UTC)
thread_title:  Gary Griffin 

message: There is another guy discovered to have been lock in for 23 years reported on by the daily mail, he was believed to be in a coma.
*http://www.dailymail.co.uk/news/worldnews/article-1230092/Patient-trapped-23-year-coma-conscious-along.html  —Preceding unsigned comment added by 71.233.43.183 (talk) 01:46, 23 November 2009 (UTC)
replies: text: Using current newspaper articles to decide what to create articles about or as the sole source for an article is perhaps problematic.   Шизомби (talk) 04:24, 25 November 2009 (UTC)

text: James Randi isn't the only dissenting voice regarding Rom Houben:  See http://www.sciencebasedmedicine.org/?p=2838 - that opinion is written by Dr. Steven Novella who is a qualified neurologist.  He also points out that we know nothing of the "brain scans" supposedly performed on Rom Houben.  He agrees with Randi that even if Rom is locked-in there is no way that he can communicate in the way shown in the videos. His opinion might be considered more expert than something written by a journalist from the UK Daily Mail.   Pinglis (talk) 20:21, 5 December 2009 (UTC)
thread_title:  Rom Houben 

message: video is about technological advancements. There is probably an article about this somewhere. I think it should be included.
http://www.youtube.com/watch?v=Xr3cbiDhcgM  —Preceding unsigned comment added by 207.47.247.201 (talk) 18:18, 10 December 2009 (UTC)
thread_title:  youtube video (read sidebar) 

message: Sometimes all muscles are paralyzed, even those of the eyes.
http://jp.physoc.org/content/579/3/621.full  — Preceding unsigned comment added by 178.118.54.41 (talk) 11:50, 27 September 2011 (UTC)
thread_title:  Complete Locked In Syndrome 

message: I've removed some irrelevant trivia about Lynsey Cribbin, a supposedly notable case of locked-in syndrome. The fact that her image was confused by some mewspaper with that of a crime suspect is utterly irrelevant to this article's topic - in fact, the source for that statement doesn't even mention the syndrome. Her parents' trust fund is marginally more relevant because it is at least connected to the syndrome, but it still provides no general information. The reference is an interview with her father; not a reliable source on a medical condition.
I'm rather doubtful about the entire "notable cases" section. Much of it seems an indiscriminate collection of cases which aren't independently notable but have appeared in the news. While obviously locked-in syndrome is very important to those persons, few of those persons are significant in the history of the syndrome. Per WP:NOT#NEWS and WP:UNDUE we should probably remove quite a few of those cases entirely. Huon (talk) 19:09, 23 September 2012 (UTC)
thread_title:  Lynsey Cribbin 

message: Information regarding Catherine O'Leary was removed from the wikipedia section due to insufficient knowledge; however a wealth of information is available on a Google Search for the story; some articles listed 
http://www.sundaymercury.net/news/midlands-news/2012/09/02/birmingham-mum-of-locked-in-girl-catherine-o-leary-says-her-daughter-wants-to-live-66331-31745618/
http://www.irishcentral.com/news/Irish-father-of-locked-in-women-agrees-with-assisted-suicide-99090114.html
http://thecorknews.ie/articles/ballincollig-family-praise-‘locked-patients-research-2935
I want to know how to get the paragraph put back on the discussion page?
(Ballwebhost (talk) 10:36, 17 October 2012 (UTC)
replies: text: I don't think the case is relevant to locked-in syndrome. The Cork News has the parents comment on some recent research results, but surely there are better sources for those results. O'Leary's own case seems rather straightforward with nothing to recommend it as "notable" above any other case. She's definitely not notable enough for an article of her own. Huon (talk) 14:48, 17 October 2012 (UTC)

text: Thats great and all well and good, but who gives you the authority to decide whether its notable or not? Are you following the situation personally, following the day to day updates on what the family go through, with struggles with executives, health services etc? Same with the Lyndsey section, you decided that it was not legible to show as a notable case? Locked In Syndrome is not a known illness, with greater chances of suffering form LIS than winning the lottery, I think every case is a notable case. (86.45.217.208 (talk) 09:43, 20 October 2012 (UTC)
replies: text: Let me put it this way: Do you really think any medical text on locked-in syndrome discusses this case as a notable example? If so, please go ahead and present such a source. If not, we're giving this case undue weight. This article is supposed to provide information on the syndrome, not be a WP:COATRACK for biographies of not individually notable people. I'm not saying the remaining cases are that much better, but the O'Leary section and the text about Cribbin I removed conveyed no information about the syndrome whatsoever, and the former was turned into an attack against O'Leary's doctors. Huon (talk) 10:06, 20 October 2012 (UTC)
thread_title:  Catherine O'Leary

message: 92.61.200.241 keeps adding trivia to the Tony Nicklinson section that are not supported by reliable sources and don't tell the reader anything at all about the syndrome anyway. There's no reason whatsoever why this article should note the fate of his ashes. Huon (talk) 01:15, 2 January 2013 (UTC)
thread_title:  Tony Nicklinson 

message: This entry lacks indenpendent sources that attest to Kati's notability. Personal web sites and future books are not reliable sources according to Wikipedia standards.  Andreas  (T) 20:58, 27 November 2013 (UTC)
thread_title:  Kati Lepistö 

message: I checked the Curare page and there it states 29 army volunteers were taking part in the curare trials mentioned, while here it says 27. Could anyone with access to the source please check which number is right? --Lowkyalur (talk) 17:58, 7 February 2014 (UTC)
thread_title:  How many volunteers for curare? 

message: This page states "Within the first four months after its onset, 90% of those with this condition die." After being told by two neurologists that they doubted the accuracy of this statement, I researched the citations and did not find any evidence to support this statement. To the contrary, I found several articles that state the opposite: 
"Ten year survival rates as high as 80% have been reported." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC549115/
"More than 85% of individuals are still alive after ten years" http://cirrie.buffalo.edu/encyclopedia/en/article/303/
"Most patients with locked-in syndrome will live 5 years or longer." http://www.texmed.org/Feb13Journal/
Disassorted (talk) 04:57, 17 February 2014 (UTC)
thread_title:  Prognosis - High Mortality Rates Incorrect? 

message: I do not see Parkinson's Disease (PD) listed as a possible cause, or mimic, of LIS.
I am aware of a patient who has carried the diagnosis of PD for about 25 years, although his neurologists have often referred to his disease as somewhat atypical for PD.  Progression has been extremely gradual, but for the last ~2-3 years he has been a classic example of LIS.  It seems that either PD can be a cause of LIS, or the progression to LIS indicates the primary diagnosis should be other than PD.  
Has PD been overlooked in the list of causative or mimic diseases?Paredown3 (talk) 20:18, 18 December 2014 (UTC)
thread_title:  Parkinson's Disease a possible cause of LIS? 

message: Thinking about adding a section that references Jean-Dominique Bauby's personal memoir of locked-in syndrome (Diving Bell in the Butterfly). Was thinking this would add a nice reference to a personal account of the syndrome.
Philosi4 (talk) 18:15, 18 February 2016 (UTC)
thread_title:  Accounts in film and literature 

message: Hello fellow Wikipedians,
I have just added archive links to  on Locked-in syndrome. Please take a moment to review my edit. If necessary, add  after the link to keep me from modifying it. Alternatively, you can add  to keep me off the page altogether. I made the following changes:
*Added archive http://web.archive.org/web/20110320131508/http://alis-asso.fr:80/ewb_pages/c/communiquer_sans_parole.php? to http://alis-asso.fr/ewb_pages/c/communiquer_sans_parole.php
When you have finished reviewing my changes, please set the checked parameter below to true or failed to let others know (documentation at ).
Cheers.—cyberbot IITalk to my owner:Online 20:38, 18 March 2016 (UTC)
thread_title:  External links modified 

message: Hello fellow Wikipedians,
I have just modified 2 external links on Locked-in syndrome. Please take a moment to review my edit. If you have any questions, or need the bot to ignore the links, or the page altogether, please visit this simple FaQ for additional information. I made the following changes:
*Added archive https://web.archive.org/web/20160212222927/http://www.thenewatlantis.com/publications/the-age-of-neuroelectronics to http://www.thenewatlantis.com/publications/the-age-of-neuroelectronics
*Corrected formatting/usage for http://alis-asso.fr/ewb_pages/c/communiquer_sans_parole.php
When you have finished reviewing my changes, you may follow the instructions on the template below to fix any issues with the URLs.
Cheers.—InternetArchiveBot (Report bug) 03:55, 25 May 2017 (UTC)
thread_title:  External links modified 

message: This blog post discusses the report of a committee at the university where the research was done, that apparently recommends that the article be withdrawn for sloppy research: http://blogs.discovermagazine.com/neuroskeptic/2019/07/02/the-fall-of-niels-birbaumer/#more-9953  
If the article is in fact withdrawn, the reference to it should just be deleted.  — Preceding unsigned comment added by Fbkintanar (talk • contribs) 17:09, 2 July 2019 (UTC)
thread_title:  More criticism of Chaudhury article. 

message: Is it possible to be able to move while having Locked-in syndrome at the same time? 
Andrewbdfe (talk) 02:26, 11 January 2020 (UTC)
thread_title:  One Question 

message: I keep seeing photos about this boy who, at the age of 12, got LIS, and spontaneously recovered 10 years later. MightyArms (talk) 02:03, 27 September 2020 (UTC)
thread_title:  Martin Pistorious 

message: Episode 7 of Season 1 ("Breakdown," aka "Accident") of the series, "Alfred Hitchcock Presents," starring Joseph Cotten and directed by Alfred Hitchcock, seems to portray Locked-in Syndrome. The main character has total paralysis including his eyes, except he can feel pressure on his chest from the car crash, can move one pinkie finger, and can cry tears. Should this be included under "See Also"? Here is a link: https://en.m.wikipedia.org/wiki/List_of_Alfred_Hitchcock_Presents_episodes 2603:6011:E400:E00:7CE5:A7F0:5146:176 (talk) 01:54, 11 June 2022 (UTC)
thread_title:  Alfred Hitchcock Presents "Breakdown"