Monday, September 8, 2014

Locked-In Syndrome



Locked-In Syndrome
Imagine being fully conscious yet unable to move any part of your body, except maybe your eyes. What a frightening thought! Yet, some people have a health condition called Locked-In Syndrome (LIS). These people desperately want to move their body parts, but they simply cannot. The brain circuits for those people do not work. 

Locked-In Syndrome is not the same as Coma or Persistent Vegetative State. The brains of those with LIS work fine, but the brain-body connection link (motor tract) is broken. The brain signals do not get to the body parts in LIS. 

There is no cure, at this time, for LIS. Knowing that, some people with LIS want to die. This is understandable. 

There are others with LIS, though, who want to live and thrive. This article is more for those with LIS who want to live as healthy and happy as they can. 

There are currently some tools to assist those with LIS. Some of these tools are Letter Boards, Brain Control Interfaces (BCI), Remote Controls, Speech Synthesis, Eye Blinks/Morse Code, and the like. Who knows what the future is? 

Those with and those around LIS might even have to make their own cure. Since so few people have this condition, the medical industry considers LIS as a low priority. Thus, a cure might have to come from the public, instead of the medical industry. 

Knowing all this, here are some general health suggestions, which might be helpful for those with LIS.
  • Be sure and work with health care professionals. Listen to their advice, diagnosis, and treatment plan. Listen to your options. Does the diagnosis and treatment plan make sense to you? Ask your doctor to clarify, if necessary. You have a right to know.
  • If the doctor makes sense to you, then accept the diagnosis. There is power in knowing what the diagnosis is. Accepting shifts the mind from helpless to hopeful. Try to think more about what you are going to do about it, instead of dwelling on the diagnosis.
  • Decide what is best for you. You are still in charge of your own health decisions, even if you have LIS. Choose and manage your own health care team. Find people you can believe in with all your heart.
  • If you decide to live and thrive with LIS, then decide on a treatment plan that is good for you. Be an active participant with your health care team. Ask questions. Ask your family, friends, and caregivers to help or support you. Develop a fighting spirit, since you are literally fighting for your life.
  • The References below both inform and inspire. You might be surprised to find you are not alone and some people are actually working on LIS medicine, coping means, treatment, and even a cure.
  • Collaborate with LIS others, maybe on a social media, like Facebook. Work together; cheer each other along, pass along helpful information. Make it your job to get better.
  • Find others who can help you. Ask around; contact those who have developed devices or treatments. These people might be at universities, hospitals, clinics, etc. You might find them on Facebook, LinkedIn, or other. If you cannot do something, find a way to make it happen. Ask someone to help. Maybe you will have to pay someone to assist you. That is okay because you are worth it.
  • Make a LIS Collaboration Tool or Wiki on the Internet for all to work together efficiently.
  • As you are learning new ways to live with LIS, do not give up hope for a cure.
  • Keep a positive attitude. Even if you cannot control your body movements, you can still control your thoughts. Mentally sweep negativity away, turn off the news, and filter out negative people (maybe even some doctors). Be funny, be humorous, and joke around. Humor is a very good medicine in itself.
  • Consider Alternative and/or Complementary Medicine, Therapy, Techniques, etc. Mind-body techniques have helped those with strokes, polio, and other paralysis conditions. Maybe these can be helpful for LIS. Self-Hypnosis, Biofeedback, and/or Neuroplasticity might be the cure you are looking for. Maybe your brain can find new neural pathways. Who knows? What do you have to lose?
  • Believe in yourself and your own healing powers.
  • Think what you would like to do in life if you did not have Locked In Syndrome. Keep this image in your mind and work toward it. Each day do more and more. Stretch yourself and take some healthy risks. In other words, have something to live for.
  • As you recover, tell others how you are doing it. You can very much help others who have LIS. Good luck in your recovery!
Takeaways -
  • With LIS, you do not have to die or give up hope for a better life.
  • You and others can work toward LIS management and/or cure, even if the medical industry has no good answers for you.
  • You are not alone with LIS.
References -
General Information -
Locked-In Syndrome - http://en.wikipedia.org/wiki/Locked-in_syndrome

Information sheet on locked-in syndrome compiled by the National Institute of Neurological Disorders and Stroke (NINDS) - http://www.ninds.nih.gov/disorders/lockedinsyndrome/lockedinsyndrome.htm

The Official Patient's Sourcebook on Locked-In Syndrome: A Revised and Updated Directory for the Internet Age - Icon Health Publications - Icon Group International, Incorporated, 2004

Internet Search String - (locked-in syndrome OR cerebromedullospinal-disconnection OR de-efferented-state OR pseudo-coma OR ventral-pontine-syndrome OR trapped-syndrome).
Combine the Search String above with other keywords that interest you. For example, if you live in Romania, add the term (site:.ro) to the search string. Add other terms, such as Cure or Treatment, as you desire.

Uplifting Personal Experiences of those with LIS -

LIS - "A site explaining how I do everyday things in my condition." - http://www.mlongo.net/

The Diving Bell and the Butterfly - "The book also chronicles everyday events for a person with locked-in syndrome." - http://en.wikipedia.org/wiki/The_Diving_Bell_and_the_Butterfly

Beating Locked in Syndrome - A True Story - http://www.facebook.com/beatinglockedinsyndrome

Locked In Syndrome Doesn't Stop Antigo Man - http://www.wsaw.com/home/headlines/85253187.html

Man with 'Locked-in' syndrome makes amazing recovery - http://www.dailymail.co.uk/health/article-1306332/Man-Locked-syndrome-makes-amazing-recovery.html

Locked In Syndrome Blog - http://lockedinsyndromeuk.wordpress.com/

LIFE Center: Locked In Syndrome Program - Overview - (one of several LIS rehab places) http://lifecenter.ric.org/index.php?tray=content&tid=top1&cid=3209

Medical Mysteries: From the Bizarre to the Deadly . . . The Cases That Have Baffled Doctors by Ann Reynolds, et al. al. HarperCollins, 2009 - See chapter 14 on LIS.

Support Groups, Forums, etc.

Locked In Syndrome - NeuroTalk Support Groups - http://neurotalk.psychcentral.com/thread14528.html

Locked-In Syndrome - Fulton County Brain Injury Support Group …http://fultoncountybraininjurysupportgroup.health.officelive.com/lockedin.aspx

Brain-Computer Interfaces (See LSI BCI references) - http://www.mp.uni-tuebingen.de/mp/index.php?id=137

Brain Stem Stroke, Locked-In Syndrome online - http://web.archive.org/web/20020202210657/http://www.buffnet.net/~billmcm/brainstem/

GARD - LIS - (caregiver, partner, spouse information too) http://rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4&diseaseID=6919

LIS Adaptive Equipment -

Combating Locked-In Syndrome: New Methods of Communication for ALS Patients - http://serendip.brynmawr.edu/exchange/node/1913

How do people cope with 'locked-in' syndrome? - http://news.bbc.co.uk/2/hi/uk_news/magazine/8378262.stm

Eye Tracking Communication for Locked In Syndrome - http://www.youtube.com/watch?v=ocg0MbBfCS0

Locked-In Syndrome: Overcome by Communicating with Brainwaves? - http://www.disaboom.com/assistive-technology-general/locked-in-syndrome-overcome-by-communicating-with-brainwaves

Machine Translates Thoughts into Speech in Real Time - http://www.physorg.com/news180620740.html

LIS - Augmentative and alternative communication - http://en.wikipedia.org/wiki/Augmentative_and_alternative_communication#Locked-in_syndrome

Mind-reading computer system may help people with locked-in syndrome - http://www.mnn.com/green-tech/research-innovations/stories/mind-reading-computer-system-may-help-people-with-locked-in-

Brain-Computer Interfaces in Paralysis: Applications in Locked-in Syndrome, Chronic Stroke, and Emotional Disorders - http://www.nyas.org/Publications/Media/VideoDetail.aspx?cid=65755c0b-e957-4992-ab08-bf2cfba46ca1

Harnessing The Power Of The Brain - CBS News - http://www.cbsnews.com/stories/2008/10/31/60minutes/main4560940.shtml

Locked-In Syndrome (BCI) - OHSU Home - http://www.ohsu.edu/oidd/reknew/reknew_lis.cfm

Connections that Count: Brain-Computer Interface Enables the Profoundly Paralyzed to Communicate - http://www.nlm.nih.gov/medlineplus/magazine/issues/summer07/articles/summer07pg20-21.html

A Wireless Brain-Machine Interface for Real-time Speech Synthesis - http://www.neuralsignals.com/nsidnn/Research.aspx

How to Make a Nurse-Call System for a Paralyzed Person - Hum-activated Nurse Call System - http://voices.yahoo.com/how-nurse-call-system-paralyzed-person-10302509.html?cat=5

Wireless Skin Surface Potential Sensing System and Method by Edward J. Wright et al, 
U.S. Patent Application number: 12/118,687, Publication number: US 2009/0281448 A1, Filing date: May 10, 2008

reSearch Vol 1, Issue 4A: Locked-In Syndrome - http://www.naric.com/public/reSearch/ReSearchVol1no4A.pdf

Brain Computer Interface | Geekosystem - (Arduino, Intendix, others) - http://www.geekosystem.com/tag/brain-computer-interface/

A galvanic skin response interface for people with severe motor disabilities by Melody M. Moore , et al. al. - http://dl.acm.org/citation.cfm?id=1028640&dl=ACM&coll=DL&CFID=63563744&CFTOKEN=85333445

The ALS Locked-in Communicator - http://www.sbir.gov/sbirsearch/detail/126863
BRAIN TALK: OPEN SOURCE BRAIN MACHINE INTERFACE - http://www.nanotechgalaxy.com/braintalk/

Sniffing enables communication and environmental control for the severely disabled by Anton Plotkin, et al. - http://www.citeulike.org/group/12458/article/7544212

Papers posted by members of the Augmentative and Alternative Communication (AAC) group related to LIS - http://www.citeulike.org/group/5453/tag/switching

Self-Hypnosis, Biofeedback, and/or Neuroplasticity for LIS -
Self-hypnosis - http://en.wikipedia.org/wiki/Self_hypnosis
Neuroplasticity - http://en.wikipedia.org/wiki/Neuroplasticity
Biofeedback - http://en.wikipedia.org/wiki/Biofeedback
Dr. Norman Doidge -
The mind and the brain: neuroplasticity and the power of mental force by Jeffrey Schwartz et al. al., Regan Books/HarperCollins Publ., 2002 - See passages on Locked-In Syndrome.
THOUGHT PATTERN MANAGEMENT™ INSTRUCTING THE INNER MIND FOR NEUROLOGICAL CHANGE OR REPAIR ©BY ROBERT W. FLETCHER - http://www.amazinglifeinstitute.org/articles/tpmanchorpointarticle.pdf

Biofeedback and Locked In Syndrome -- in ALS (Amyotrphic Lateral Sclerosis) or Lou Gehrig's disease - http://www.futurehealth.org/Simple/Biofeedback-And-Locked-In-Syndrome-In-40.html

Milton H. Erickson (see using hypnosis for polio paralysis) - http://en.wikipedia.org/wiki/Milton_H._Erickson

Millboro and More: Introducing Hypnotherapy for Stroke Paralysis by Marge Rieder, Publisher: Blue Dolphin Publishing, Incorporated, 2003

How to Make Your Own Healing Machine - http://interesting-health-information.blogspot.com/2014/08/how-to-make-your-own-healing-machine.html

Disclaimer - Article is for informational use only is not medical advice.

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