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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Hip and Knee Information Your Doctor Might Not Even Know About



Hip And/or Knee Replacement – Read All About It! - Hip and Knee Information Your Doctor Might Not Even Know


Knee and/or hip replacement is becoming very popular, especially with the boomer generation. Yes, your doctor or hospital will probably inform you very well. You might still want to know more. Friends and family members will probably want to know what to expect also. 

Here is a collection of resources that you can use to make intelligent health decisions. 

Work with your health care professionals and listen to their advice. However, do what is best for you. You know your body and situation better than anyone does. Decide for yourself. You are in charge of your health. You have a right to be as healthy and happy as you possibly can be. 

You might be content with depending completely on your doctor and hospital for guidance. That is okay. 

This article, however, is more for those who want to know more. They want to learn, especially from those who have actually had these surgeries. 

If you are a person who wants to know more, dive into the information below. Find out from others how they have handled situations. Ask questions to those who have had surgeries similar to yours. They might be able to give you the best answers. Health care professionals want to help but they probably have not experienced first-hand what it is like to have hip or knee surgery. 

In the end, do what is best for you. You decide for yourself. Consider a second opinion. Good luck in your recovery. Consider sharing your experiences with others, so they can learn just as you did. 

For more information -
 
General Information -
Support Groups, Forums, etc.
For Children -
Disclaimer - Article is for informational use only and is not medical advice.

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Do You Overeat, Under-eat, or Have Other Eating Problems?



Is Food and Eating a Problem for You? - Do You Overeat, Under-eat, or Have Other Eating Problems?


Maybe you are overweight, underweight, or cannot stop thinking about food. Some say there is an obesity epidemic. You can help yourself, even if others around you do not want to eat healthy. 

Perhaps you know how you should eat, but you cannot seem to do it. You try repeatedly, but the results are not consistent. 

Have you ever considered that you might have a thinking problem that exhibits itself as an eating problem? Maybe you need some help. Please consider the following.

Action plan to help yourself eat healthier:

1. If possible, check with your doctor or other health professional. Ask what a healthy weight is for you. Also, ask for an eating and exercise plan, that you can manage long-term. Now you know what to do. All you have to do is to do it.
2. To help you accomplish long-term eating success, investigate the various support resources. Pick one. Do not make it a big deal, since you can always change your mind. Consider what you can afford. Take into account your personality style. Go with your intuition on who you think might be most helpful. Some resources are below.
3. While it is still fresh in your mind, write down how your eating and weight are affecting you. Include how your habits affect others around you. No one has to see what you write, just you. Write down whom you are going to contact for help.
4. Mail this letter to yourself. If you can, tell a trusted person of your intended actions to help yourself.
5. Contact the person or agency, as you told yourself you would. Listen to what they have to say. Make an appointment. If it is an organization with meetings, pick a meeting time and place.
6. Go to the appointment or meeting. Show up. See what happens. Participate as much, or as little, as you want to.
7. If you feel better after going to meetings, it is working. Stick around, keep an open mind, and watch yourself improve.
8. Give it a fair chance, of maybe six meetings.
9. If you have troubles, talk about them. Maybe others have had similar situations and have helpful suggestions.
10. Find someone at the meetings who is managing their eating, as you would like to do. Ask that person what works for them. Learn from them. Ask if they have any suggestions for you.
11. Keep coming back. Watch yourself and others get better. What do you have to lose? 

Takeaways -
  • There is always hope. Keep looking until you find something that works for you.
  • Associating with others who want to stop overeating might be helpful for you.
  • You have a right to be as healthy and happy as you can be.
For more information:
Disclaimer - Article for informational purposes only and is not medical advice.

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You Can Help Discover How Seizure Alert Dogs Can Sense Seizures



How Do Some Dogs Know Someone is Going to Have a Seizure? - You Can Help Discover How Seizure Alert Dogs Can Sense Seizures
It seems like research efforts in this area have started but stopped due to lack of funding and/or interest. Maybe research stopped due to reasons hidden from the public. The information on this topic is scattered all over the Internet and in various publications. 

Observing and videoing seems like something the public could very well do. 

The research up to now focuses mostly on monitoring the Seizure Alert Dog, while perceiving a person's impending seizure. The average person could video these moments. Admittedly, it would be hard to capture on film, but yet doable. 

Another research tool has been simultaneous EEG monitoring of the patient and monitoring of the dog. This is probably out of the realm of most of the public. Universities and other public institutions might take this on as a learning opportunity for students. 

The findings from the public collaborating on "open research" and "open innovation" could provide valuable insight on this topic. Public research and innovation can proceed with or without funding, simultaneously all around the world. 

The people most interested in this topic could drive this public research and innovation. Interested people could include people who have seizures, service dog trainers, veterinarians, doctors, and the like. 

The goal might be "find out how some dogs can sense an impending seizure". To achieve this goal, here are some proposed action steps.
  • Let others know you are interested in finding out how dogs can sense seizures. Social media, such as Facebook and/or YouTube, could spread the word. Maybe even make a wiki to share work in collaboration.
  • Show this article to your doctor and enlist their help. They probably have anecdotal experiences and insights to share on the wiki.
  • Forward this article to service-dog training organizations. Ask them to add their observations to the wiki. When a dog detects an impending seizure, what do they do? Does the dog perk up its ears? Does the dog sniff the air? Ask them to help in this public project.
  • Mail this article to universities, colleges, schools and ask the students to help. Remind them to log their progress on the wiki, for others to follow.
  • Add your own comments on the wiki. Encourage collaboration amongst the participants. Recruit participants you think might be helpful. Contact retired or unemployed experts to assist in this topic. They might have the most time.
  • Ask your local library to help you find resources on this topic. Read the sources, write a short review, and post it on the wiki. Your local library can help you find networking opportunities too.
  • Set up internet alerts, such as Google Alerts, to notify you and the wiki of new findings.
  • If you have a Seizure Alert Dog, do your best at videoing your dog sensing an impending seizure. Share the video on the wiki and Internet for others to analyze. Ask for help as needed to accomplish this task.
  • Summarize findings and draw conclusions. Let the scientific community know of the results. Consider a press release.
  • Your work could very well help find out how some dogs can sense seizures. Think of the possibilities! Training could improve and focus on the exact sensing action. This knowledge could create new products, techniques, and services that could very well save lives. If this is important to you, do not wait for scientists to do this. They might not find this topic sufficiently profitable or prestigious. You go for it!
For more information:

Disclaimer - Article is for information only and is not medical advice.

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