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NIH Funding Opportunities and Notices in the NIH Guide for Grants and Contracts: Announcing Initial Implementation Timeline for Enhancing Peer Review NOT-OD-08-118. NIH

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Imagine losing control over everything. You can't move on your own. You can't scratch an itch. And worse still, you can't tell anyone around you that you have an itch. You can feel pain, hunger, loneliness, and fear, but you can't react to those sensations. You are totally aware of your surroundings, but you can't communicate your feelings or desires, or even your basic needs. The term for this horror is locked-in syndrome. Someone with locked-in syndrome suffers from paralysis of all voluntary muscles

In a 1987 study, Haig et al1 reported on 27 patients with locked-in syndrome (LIS). A slightly expanded group of 29 patients was studied by Katz2 and Doble3 and colleagues. To our knowledge, these are the largest follow-up studies of persons with LIS, and the only ones to report survival probabilities. Their findings on longevity were summarized by Doble as follows: “Five-, 10-, and 20-year survival were 83%, 83%, and 40% respectively.”3(p438)

Locked-in Syndrome PubMed published article

An abstract is unavailable.

Coronavirus disease 2019 (COVID-19), apart from commonly involving the respiratory system, has its impact on the central nervous system, with a wide spectrum of clinical presentations ranging from headaches to ischemic strokes. The ongoing research regarding this novel disease has found that there is a very high prevalence of thrombotic episodes especially in critically ill patients when compared to severe presentation of other viral illnesses. This COVID-19-associated coagulopathy has a very complex etiology with the ability to form thrombus in arteries, veins, and microvasculatures of different organs. We present a unique case of a young woman with underlying COVID-19 who unfortunately developed locked-in syndrome due to bilateral pontine infarction during the course of her illness.

Rushed to a Massachusetts emergency room four years ago, 28-year-old Jacob Haendel exhibited signs of stroke. Doctors thought Haendel was in a vegetative state and would soon die, but the one-time chef was very much awake and conscious, suffering from locked-in syndrome – a purgatory between life and death. Correspondent Lee Cowan talks with Haendel about his extraordinarily rare medical trauma, and about his remarkable recovery. "CBS Sunday Morning" features stories on the arts, music, nature, entertainment, sports, history, science and Americana, and highlights unique human accomplishments and achievements. Check local listings for CBS Sunday Morning broadcast times. Subscribe to the "CBS Sunday Morning" YouTube channel: http://bit.ly/20gXwJT Get more of "CBS Sunday Morning": http://cbsn.ws/1PlMmAz Follow "CBS Sunday Morning" on Instagram: http://bit.ly/23XunIh Like "CBS Sunday Morning" on Facebook: https://bit.ly/3sRgLPG Follow "CBS Sunday Morning" on Twitter: http://bit.ly/1RquoQb Subscribe to our newsletter: http://cbsn.ws/1RqHw7T Download the CBS News app: http://cbsn.ws/1Xb1WC8 Try Paramount+ free: https://bit.ly/2OiW1kZ For video licensing inquiries, contact: licensing@veritone.com

A stroke in the brain stem can cause the very rare condition of locked-in syndrome, where the person is conscious but unable to move apart from their eyes.

Locked-in syndrome is one of the most disabling states characterized by the preservation of conscious mind within a quadriplegic and anarthric body. R…

Background Improved knowledge of the quality of life (QoL) of locked-in syndrome (LIS) patients have implications for managing their care, and assists clinicians in choosing the most appropriate interventions. We performed a survey of a population of LIS patients to describe the course of the QoL of LIS patients over a 6-year period and to determine the potential predictive factors of QoL changes over time. Method This is a study performed over a 6-year period in patients with a LIS diagnosis. Questionnaires were sent in 2007 and 2013. The following data were recorded: i) sociodemographic data; ii) clinical data related to LIS, physical/handicap status, psychological status; iii) self-reported QoL: Anamnestic Comparative Self-Assessment (ACSA); iv) Integration in life: French Reintegration to Normal Living Index (RNLI). Results Among the 67 patients included in 2007, 39 (58 %) patients returned their questionnaire in 2013. The LIS etiology was stroke in 51 individuals. The QoL of the patients was relatively satisfactory compared to populations in other severe conditions. Twenty-one (70 %) individuals reported a stable/improved QoL between 2007 and 2013. The physical/handicap statuses in 2007 and 2013 were not related to the QoL 6 years later, with the exception of one communication parameter: the individuals who used yes-no code reported significantly lower QoL levels than those who did not in 2013. Discussion In opposition to a widespread opinion, LIS persons report a relatively satisfactory QoL level that stays stable over time, suggesting that life with LIS is worth living. Preservation of autonomy and communication may help them to live as normal life as possible.

Locked-in syndrome may be incomplete (patients have some voluntary movements) or total, where persons are completely motionless including absence of vertical eye movements. The condition is typically caused by vertebrobasilar infarction with pontine infarction. This video (beginning 00:30) illustrates a 22-year man who developed acute basilar artery infarction attributed to dehydration with Factor V Leiden, causing a large pontine and cerebellar infarct despite aggressive treatment with IV thrombolysis and endovascular thrombectomy. He became locked-in but awake and attentive, with a gaze preference to the left and minimal horizontal eye movements to the right. Over the next 18-24 months he gradually improved to near normal function; imbalance due to spastic ataxia remained and he retained a mild residual horizontal ophthalmoplegia and left facial weakness in an upper motor neuron pattern, but most other motor functions recovered well. For full case details see http://ja.ma/1HSCege.