Stroke and Neurology Information

Brain Stem Stroke and Locked-In Syndrome

The brain stem (brainstem) controls many of the body's involuntary functions such as breathing and body temperature regulation and is the area of the brain that "passes information" between the cerebral cortex (where consciousness resides) and the rest of the body. Strokes to the brainstem can leave a person with what is called "locked-in syndrome." Individuals with locked-in syndrome are conscious and have cognitive function but, because of the damage to the brainstem, they are unable to speak or move functionally. While many patients do not recover significantly some, in time, do.

Links from this page will take you to sites with more information about strokes, locked-in syndrome, the brain's function and the latest breakthroughs in technology. We will update it as we find more (last updated 04.21.03).

Also see the Visiting FAQ for information about communicating with a locked-in stroke survivor.

March 10-16, 2003 Brain Awareness Week
Created to elevate public awareness of brain and nervous system research.

Information on Locked-In Syndrome, Brainstem Stroke, Neurology and Brain Function

ALS Association Website

American Association for the Advancement of Science

Association for the Locked-in Syndrome
(ALIS) in both French and English

Bill's Locked-In Syndrome / Brain Stem Stroke Site
Bill's site has been down for some time. This link should take you to an archive of the last update of the site (06/05/02). Bill McMurray, a brain stem stroke survivor, featured links to survivor's stories, resources, message boards and more at his webpages.

Brainstem Stroke Syndromes

The Brain Stem and Cerebellum

The Brainstem - Table of Contents

Brain Briefings, from the Society for Neuroscience
Information about both brain function and disability

Brain Function: Cerebellum and Brain Stem
from Waiting.com

Brain Injury Resource Center

Head Injury Website
Lots of information about TBI, rehab listings, assistive tech info, psych stuff, advocacy, legal advice.

Medline Plus, Health Information

National Stroke Association

National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/

Neuroguide.com - Neurosciences on the Internet

Spaulding Rehabilitation Hospital

Stroke Support Network

The Stroke Network Home and
Brainstem Stroke Information Page This site also includes links to various Brainstem Stroke sites and info.

Vision Rehab Information

Optometric Extension Program Foundation Info about vision, vision care and vision rehabilitation

NORA - the Neuro Optometric Rehabilitation Association

Stem Cell Research

Paralysis.org: The Christopher and Dana Reeve Paralysis Resource Center

International Society for Stem Cell Research

Stem Cell Research Foundation

Stem Cell Main Page

ReNeuron Limited - Biotechnology Research : Neural Stem Cell Transplantation : Brain Disease : Brain Cell Therapeutics

Assistive Technology and Products

Manufacturers of Electronic Communication Aids
from The University of Wisconsin

Centre For Neuroskills
Traumatic Brain Injury Resource Guide

Assistive Technology, Inc.

Adaptive Computer Products

Mind Controlled Switch

Eyegaze video-tracking system

Gus Communications Inc

VisionKey

Words+ Inc

Mayer-Johnson

Prentke Romich Company

Web-based Discussion Groups

Mikey's Brainstem Stroke Forum (coming Feb 03)

MGH's Neurology WebForum
to discuss and comment on Stroke
(MGH's webforum Archives) older postings, but still lots of good info there.

Stroke Network Message Board
(updated link) Web Chat board

Survivor Stories and information
(more surrvivor links at Bill's site)

The Diving Bell and The Butterfly
by Jean-Dominique Bauby.
This book is a must-read for understanding the experiences of a person with Locked-in Syndrome. Also see the ALIS website for more information.

Stephen Hawking's Website contains some information about the assistive technology he uses to communicate and get around with, and information about his struggles with ALS.

Unlocking Locked-In Syndrome
from the Society for Neuroscience

Locked-in Syndrome (radio transcript)
A look at the achievements of some extraordinary people who suffer from this syndrome

Locked In: The Story of Judy Mozersky
from Cornell Magazine

Stem Cell Research; Stroke Research Trials:

American Association for the Advancement of Science

The Stroke Information Directory | Trial Notices

Coaltion for the Advancement of Medical Research

CRPF News