Talk:Locked-in syndrome

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Twilight Zone Episode?

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)[reply]

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)[reply]

Contradiction

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)[reply]

People, like my brother, with locked-in syndrome still feel bodily sensations. And, panic, along with all the other emotions, may be felt as well. Day 11/1/05

I was about to ask the same question Delldot did. This contradiction should be fixed.

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)[reply]

The Post-Traumatic Vegetative State By Giuliano Dolce, Leon Sazbon (available through Google Books) page 37 gives the neurological characteristics of locked-in syndrome, and the feeling of pain is present, as is a normal sleep-wake cycle and relatively normal EEG activity. Thayvian (talk) 12:00, 16 March 2008 (UTC)[reply]

Technologies mentioned

The article states "several devices are available to help patients communicate." What are those devices? I am a software engineer and work in visualization and have interest in make in cheap communication device so I would like to know if it exists already. --dmcmanam July 12, 2006 (UTC)

A good description of the technology involved is available here. --Arcadian 19:46, 25 July 2006 (UTC)[reply]
A description of possible technologies is available here.

Capitalization

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)[reply]

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)[reply]
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).[reply]

Metallica "One" video

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)[reply]

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)[reply]
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)[reply]
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)[reply]
I removed the section, as it's evidently not pertinent. rone (talk) 06:38, 26 July 2010 (UTC)[reply]

It seems like this is becoming a persistently reoccurring entry, along with Johnny Got His Gun. Both may be tangentially related in that the amputee loses the ability to talk, but neither is directly correlated with neurological impairment leading the coma-like state called Locked-In Syndrome. I'm removing both links, I hope, for the last time. -- BroJohnE (talk) 16:26, 15 January 2015 (UTC)[reply]

BBC article on this

http://news.bbc.co.uk/1/hi/health/7094526.stm 86.132.138.84 04:30, 15 November 2007 (UTC)[reply]

Trivia Section

You can have a look at the Wikipedia guideline on trivia here: Wikipedia:Trivia sections. If material from trivia sections can be incorporated into the article, it should be, as has been done with the Bauby book and film. However, this is an encyclopedic article on a medical condition, not a repository for every mention of the medical condition in popular culture. The fact that Locked-in syndrome was featured on an episode of CSI, or House, or Scrubs, or Desperate Housewives or the subject of a Metallica song is not appropriate for an encyclopedic article on a medical condition. If you think any of the information should be incorporated into the article, please do so. Dgf32 (talk) 17:01, 10 March 2008 (UTC)[reply]

I disagree with you. First it's not really a trivia section, it's a list of books etc where locked in syndrome is mentioned, many articles (and encyclopedias) have such lists. Why is this specific list notable? Because if someone is trying to get more information about what it's like for a locked in person, that is exactly where they would look! This list is actually a very important part of the article. Locked in syndrome is a very rare and strange situation, and people have a hard time understanding what it's like. Reading books, or watching films about it helps people understand.
You would have a point if the list is very very long, you are right: wikipedia can not be a repository for every place it was mentioned. But in actuallity the list is not that long, and unless there are a tremendous number of book etc written about it in the near future, it's unlikely the list will grow all that much.
One thing I will say: if you wish to remove incidental mentions of locked in syndrome I would support that. The metallica song was already removed, and looking at the list all the other ones have a main character with the condition, so they are appropriate. Ariel. (talk) 23:06, 10 March 2008 (UTC)[reply]
That's a very good point. Accounts of patient experiences with locked-in syndrome would be useful, but it would be better to integrate them into the article rather than have a pop culture section. Dgf32 (talk) 23:12, 10 March 2008 (UTC)[reply]
I edited the list removing the following: the Metallica song, the novel Sleepyhead ("a murderer is able to induce locked-in syndrome by manipulating cranial pressure points"), and the German metal band SITD song. Dgf32 (talk) 23:21, 10 March 2008 (UTC)[reply]
SITD isn't metal - they're electronic, or industrial. Second, the song did a notable job of having a dramatic effect in regards to the probably-nightmarish situation of suffering from locked-in syndrome. The whole idea of adding the song to the "cultural references" is so people could check out some artistic representations of the emotional/etc. effects of that syndrome. Frankly, this is valuable considering the obvious harsh nature of locked-in syndrome. "this is an encyclopedic article on a medical condition, not a repository for every mention of the medical condition in popular culture"? Yup, but it's not an entry in a medical dictionary/glossary/textbook. It's an entry on a site where people go to find a wide variety of information on a subject. Just because they're searching a medical condition doesn't mean they want textbook data. Searching something of a certain subject doesn't inherently preclude wanting related information of a wider variety of natures. Not to mention, no one was intending to keep a list of EVERY mention of LIS. As you had seen, just a handful of people added references they felt were notable, for cultural or informative reasons. Frankly, if someone thought it was worth editing the page and adding, it probably WAS.66.119.170.242 (talk) 21:41, 18 September 2008 (UTC)[reply]
I hate junking articles up with tags, so I removed the trivia tag. However anyone should feel free to integrate the subject matter into the article. Dgf32 (talk) 23:28, 10 March 2008 (UTC)[reply]

William and Mary

There is an old Roald Dahl short story by the name of William and Mary in which a man is simply a heart, a brain, and an eyeball. Not exactly Locked-In Syndrome, but it's interestingly close. Thought occurred to me as I was watching The Diving Bell. Anyway, if there is any place for this information, please look into it.

Maladie de l'emmuré vivant vs. Eingeschlossensein

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)[reply]

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)[reply]

Restorative therapy

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)[reply]

anesthesia awareness

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)[reply]

Gary Griffin

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)[reply]

>>>> I disgress, Griffin has a condition in which a patient is aware and awake but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. That's the definition, correct? Regardless, the disease basically qualifies as nerve cell damage. —Preceding unsigned comment added by Yelyahsandy (talk • contribs) 02:22, 8 November 2010 (UTC)[reply]

Rom Houben

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.

I'd recommend some caution regarding Rom Houben's treatment in this article. While there are plenty of articles that all repeat the same quotes, it's difficult to dismiss the lone dissenting voice of James Randi on this topic (http://www.randi.org/site/index.php/swift-blog/783-this-cruel-farce-has-to-stop.html ), who bases his skepticism on a couple of videos showing exactly how Rom Houben is communicating with the outside world: By having his mother hold his hand and moving it on a keyboard. In one of those two videos, Rom clearly has his eyes closed, which makes one wonder how exactly he his choosing which letters to press.

With that said, that doesn't account for the brain scans most articles mention. It is possible that Rom is actually locked-in, yet has his hand used like a puppet to put words in his mouth (and soon, a book!) That's a somewhat disturbing thought, which I hope the coming days will help clear up or confirm, as this is a very fresh story. 66.68.113.5 (talk) 20:22, 24 November 2009 (UTC)[reply]

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)[reply]
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)[reply]

youtube video (read sidebar)

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)[reply]

Complete Locked In Syndrome

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)[reply]

Lynsey Cribbin

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)[reply]

Catherine O'Leary

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))[reply]

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)[reply]
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))[reply]
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)[reply]

- Can I ask, why are such articles on the page allowed (Lynsey Cribbin from Cavan, Ireland, woke up with several headaches in January 2012. She suffered multiple strokes which left her on life support and eventually with one of the most severe cases of locked-in syndrome. Her brain works but she cannot move) when this seems a lot less of an interest than the article about Catherine? I'm actually a close relative of Catherine, and would love to have the information available. We've went through quite a bit of fighting for her and are still fighting to this day, I find it right to have some form of public information available for Catherine's case. - P. — Preceding unsigned comment added by 17.64.75.169 (talk) 08:18, 25 March 2013 (UTC)[reply]

Tony Nicklinson

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)[reply]

Kati Lepistö

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)[reply]

How many volunteers for curare?

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)[reply]

Prognosis - High Mortality Rates Incorrect?

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)[reply]

Parkinson's Disease a possible cause of LIS?

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)paredown3[reply]

Accounts in film and literature

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)[reply]

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More criticism of Chaudhury article.

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)[reply]

As of December 2019, this article has been retracted, so I am removing the reference from the article. Ethanbb (talk) 05:52, 22 January 2020 (UTC)[reply]

One Question

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)[reply]

Martin Pistorious

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)[reply]

Alfred Hitchcock Presents "Breakdown"

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)[reply]

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