Gone to Hawaii

I'm leaving today. January 14, 2012  for a two week cuise to Hawaii. I think you'll find the information my latest post at my blog:   http://www.braininjuryinsideout.com/

Hawaii is the only state I haven't visited, and I'm excited. We'll be at sea about 9 of the 14 days we'll be gone, so I'll have lots of tilme to read. Reading and writing are two of my favorite things to do. I may not be making any more posts until we get back; it depends on where I find internet access.

I'll miss writing for you!

Reframing my Attitude about my Hip Pain

If you missed my last post, you may be asking "What does hip pain have to do with brain injury?"  The answer is:  It appears that a traumatic brain injury (TBI) I had in 2010 caused my hips to have big problems. I was so out-of-balance when walking that I exacerbated tears that may have been already present  in a major butt muscle (gluteus medius) and in the lining of my hips (labrum.)  The tears couldn't have been too bad before the injury, as I walked a 1/2 marathon in Summer, 2010 with no pain!

It looks likely that I may need to learn how to live with my hip pain.  I mentioned in my last post that the hip doctor wanted to rule out lupus or rheumatoid arthritis as the reason for the muscle and labral tears.  We've ruled that out, so the question is:  At my age (66), can the tears be repaired?

I've been answer-shopping (asking the same question of several people in an effort to get the answer I want.)  So far, my family doctor, physical therapist, the rheumatoid arthritis doctor and the hip doctor have said it is doubtful surgery would be helpful.  I'm getting a second opinion from another hip doctor, and if his answer is also negative, my last resource is in Sheridan, WY!  My sister-in-law Stacy sent me an article about a new doctor who has moved to Sheridan who specializes in repairing labral tears.  It would be ironic if I were unable to find a doctor here in Denver who could repair the tear, and found somebody in Sheridan, WY (population:  about 16,000.)

In the meantime, I need to "reframe" how I think about my pain.  I need to stop feeling sorry for myself and become more proactive about doing something for the pain!  Below is a link to an interesting article about the reframing technique.  The article states:

Every negative aspect of life can be reframed to help us find the positive side. Reframing gives people the ability to exercise their freedom to challenge themselves to always look for the good and the beautiful in everything they see. Reframing your mind will surely works wonder and makes you happier.

http://www.articlesbase.com/art-and-entertainment-articles/reframing-technique-466872.html

I've always said I like challenges and change.  My experiences with brain injury is showing me that I like challenges and change; but only when I'm in control of the challenge or change.  I'm not so wild about it when the challenge or change is not something I chose!

To reframe my attitude about the pain, I asked myself the questions:  Okay, what do I want my life to look like whether I have the pain, or don't have the pain?  How do I get that life?

Those two questions are really helping me to stop the "poor me" thinking, and to concentrate on the answers to the questions.  Below is another excellent article about reframing.

http://www.projectresilience.com/reframing.htm

I didn't know until I began researching links for this blog that reframing began with Neuro Linguistic Programming (NLP.)  I learned it in a spiritual context aimed at getting rid of old, negative thoughts and replacing them with positive thought and action.  Here are a couple of interesting You Tube video links that look at reframing from several perspectives.

http://www.youtube.com/watch?v=hwf6sjcE1AQ

http://www.youtube.com/watch?v=LtPEYZfl-Ik

http://www.youtube.com/watch?v=QC6JG76ZZe4&feature=related

I've never dwelled so much on my butt! And what does that have to do with brain injury?

If your read my December 18, 2011 blog you'll see that I'm having painful, even debilitating hip problems.  In June, 2010 I walked a half marathon with no pain!  Now I can't walk  half a block without big-deal pain!

These problems didn't start until after I had the last TBI in October, 2010 which I believe knocked me off-balance enough that my hips took the blunt of my lack of stability.  I used a cane for awhile to keep from falling over, and eventually PT (physical therapy) did improve my balance enough that I feel much more stable.  The PT was also for my hips, but it didn't help them.

A November, 2011 MRI shows that I have labral tears in my hips and a torn gluteus medius.  Basically what torn labrals means is I have tears in the lining of my hip.  Here's a brief description of the causes of labral tears:
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Causes of Acetabular Labral Tears

A labral tear in the hip joint can be a result of degeneration of the tissue over time or from a traumatic (acute) injury.

People with extremely flexible hip joints, such as dancers, gymnasts, and yoga enthusiast are at greater risk of a degenerative tear. A degenerative tear occurs with repetitive use and activitywearing down the tissue. Without proper healing time, the worn tissue eventually weakens and tears. A degenerative labral tear is often an early sign of hip arthritis.

An acute labral tear happens immediately during an accident, fall or sports injury. A sudden twist or blow to the hip joint may cause the hip to dislocate (subluxation) and the labrum to tear.

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The link for the rest of the article regarding labral tears is below.  Every cause of labral tears given above fits me. I'm very flexible; I'm a yoga enthusiast; when the pain started I did even more yoga/pilates because it gave me temporary relief from the pain; and I've had a couple of hard falls in the last year.  Aging tissues makes these kinds of injuries harder to repair surgically, as tissue becomes brittle as we age.

 http://www.mendmyhip.com/hip-strain-tendinitis-tear-injuries/acetabular-hip-labral-tear.php

The link above provides remedies for healing labral tears.  I don't yet know if those are good recommendations.  The hip surgeon I saw wants to rule out rheumatoid arthritis or lupus as causes of the tears.  He also didn't take the "pain quotient" from these labral tears, and the torn gluteus medius, (more information below), very seriously.  (See my December 18, 2011 posting at  www.braininjuryinsideout.com.)  I suspect he viewed me as an aging hypochondriac female with the pain being more in my head than in my hips.  I will look for a different surgeon, as I refuse to believe I have to live with this much pain for the rest of my life.  But it is interesting to know that either rheumatoid arthritis or lupus could cause these injuries.

The torn gluteus medius is causing most of my pain.  During workouts, many of us try to strengthen our "glutes," or try to work on our glutes to get a better shaped butt.  My butt has always been a "sore spot" because I've always thought it was too big.  Now I know what having a butt as a sore spot is really about.   It's painful to sit, stand, walk, exercise, or lie in bed unless I'm lying on my left side.

The diagram above shows why a tear in any of the major butt muscles is not much fun.  These are big muscles that control a whole lot of movement!

The link below takes you to an article that is informative about the whole "torn gluteus medius" subject.

 http://www.mdguidelines.com/gluteus-medius-tear

I have an appointment tomorrow (Friday, December 30, 2011) with an arthritis specialist.  I will be very surprised if I learn that these tears have anything to do with arthritis or anything like lupus.  I'm anxious to begin some sort of healing process, as a complete tear of any of those major butt muscles would make me unable to use my leg at all.

I am trying to coach myself through this painful episode.  By asking myself some of the same questions I'd ask a client (e.g., "What do you really want?  What are steps you can take to get what you really want?  What obstacles are in your way?"), I arrived at the need to find a different surgeon, even though the one I saw was highly recommended as being "one of the best hip doctors in the U.S."

Hyperacusis: When Sound is Painful

(For a description of a few of my personal experiences with hyperacusis, please go to my personal blog at www.braininjuryinsideout.com)


As a result of my 2006 brain injury (BI), I have hyperacusis, unusual sensitivity to sound.  A lot of other people with BI  have this potentially debilitating condition, and it often goes undiagnosed.  Here are a couple of videos and a link that clearly explain this painful condition.  While it's sometimes linked with tinnitus, I don't have the ringing in the ears associated with tinnitus.
.

http://www.entnet.org/HealthInformation/hyperacusis-increasedsensitivity.cfm

The video below is also a great description of how hyperacusis can change your life, even when it's not caused by BI.  The narrator is Chris Singleton, the musician who sings "Lady Gasoline."

YouTube has a lot of videos about hyperacusis.  Several different kinds of treatments are recommended.  I've not had measurable success with any treatments; I think the passage of time is helping as long as I don't expose myself to painful sound.  When I do, the sensitivity returns full force!

Self Awareness and Brain Injury

For my more  personal thoughts on this subject, please go to my other Blog: http://www.braininjurylifecoaching.com/

Yesterday, my 26 year old niece said "Maybe I'm not as good as I think I am."  That one comment caught my attention as it pertains to people with Brain Injury (BI).  How "self-aware" are people with BIs of all kinds?
     To my surprise, there are many internet sites that pertain to this question!  Here are a just a couple of links that will lead you to many articles on the topic of impaired self awareness:   http://scholar.google.co.uk/scholar?as_q=Impaired+awareness+and+employment+outcome+after+traumatic+brain+injury.http://scholar.google.co.uk/scholar?as_q=Impaired+awareness+and+employment+outcome+after+traumatic+brain+injury. 

http://www.mendeley.com/research/impaired-sustained-attention-and-error-awareness-in-traumatic-brain-injury-implications-for-insight/

     An (unscientific) quick survey of many of the sites seems to show that, generally speaking, groups made up of other people with BIs work better to impact self-awareness than individual sessions.  This may be counter-intuitive to people without BIs, as they may prefer to be "corrected" in private.
      My experience with a program that Denver Options www.denveroptions.org/ runs called the
Brain Injury Survivor Series http://ctat-training.com/brain-injury tells me why people with BI may prefer to receive helpful feedback in a group.  All of us who attend are glad to be in a room filled with people just like us; it's comforting.  We make jokes about our "short-comings," e.g.  "Tomorrow, I may not remember having been here, but it sure is fun right now."  or "Give me a few hours, and I'll answer your question."  Speakers at the meetings always present useful information in a way that even people with more severe BIs can understand.
     I attend as both a survivor and a professional, since I have a small business coaching other people with BIs.   http://www.braininjurylifecoaching.com/  I get the most benefit from the "survivor" part of my life.  For example, I'm comfortable asking others for feedback regarding my tendency to stutter or not be able to find the right words (aphasia) in this setting.  In a setting with "normal" people, I wouldn't ask for this feedback because I'd be concerned that they thought I was "milking" my TBIs  for sympathy, or that people are pretty sick of hearing about my BI symptoms.

Happy Thanksgiving!  

Persistent Vegetative State: Potentially Revolutionary News

Hi, Readers---I welcome your comments on my blog postings or blog design.  I'd also love to have you follow my blog.  It will be easy to keep up, as I plan to update my blog at least once a week, and some times twice a week.  Warmly, Doris

A recent headline in the New York Times paper is “Study Finds Signs of Awareness in 3 ‘Vegetative’ Patients.”  My heart instantly went out to the many people in the world whose guilt and/or hopes are raised by this news.  The link is:

http://www.nytimes.com/2011/11/10/health/research/brain-exam-detects-awareness-in-3-vegetative-patients.html?_r=1&ref=health&utm_source=RSS+Feeds%3A+Aggregate+News+%26+Info&utm_medium=email&utm_campaign=Feed%3A+TBI_News_Information+%28TBI+News+and+Info+-+BrainLine.org%29

I’ve had personal experience with this kind of issue.  Since my intent is to make this blog less personal and more informative, please go to my more personal blog:  braininjuryinsideout.com for my story about my brother-in-law Hal.


This research, if found to be conclusive, would completely debunk information provided In an article about persistent vegetative states (PVS), written in 2005 by a member of the  American Hospice Foundations , link below. 
http://www.americanhospice.org/articles-mainmenu-8/caregiving-mainmenu-10/50-coma-and-persistent-vegetative-state-an-exploration-of-terms


 This article is representative of many written only six years ago.  For some of us, however, who have dealt with words like "vegetative state,"  we knew there was still a functioning person in there.  If we had refuted the conclusion (below) from the article, we would've been discounted as being "emotional" or "too close to the problem" to see it clearly.  


"A vegetative state exists when a person is able to be awake, but is totally unaware.  A person in a vegetative state can no longer “think,” reason, relate meaningfully with his/her environment, recognize the presence of loved ones, or “feel” emotions or discomfort. The higher levels of the brain are no longer functional.  A vegetative state is called “persistent” if it lasts for more than four weeks."


Research with a larger group of people diagnosed as in a  PVS may not  result in the same conclusion as the New York Times article.  I hope, however, that the article and its findings will cause many family members and medical practitioners to examine their own assumptions about the capabilities of the person for whom they are caring.

Wow! One Organization Coordinating all Brain Injury Research?!!

     I subscribe to a free newspaper called “Brain in the News,” published by Dana Press, a division of the Dana Foundation (www.dana.org.)   While not all of their information is about Brain Injury, they usually have at least one article on that topic.  They also have a blog that is interesting and fun to read.  http://danapress.typepad.com/

     The October “Brain in the News” edition has an excellent article called “TBI:  The Injured Brain.”  A sidebox in the article includes a link to an organization whose goal is to be the “single organization that brings together the science, technology, financial resources and knowledge required to create an unprecedented understanding of brain disease.”  http://1mind4research.org

     1mind4research would like to accomplish this goal by the end of this decade.  This would be a great step forward for the millions of us who have sought, often with great frustration,  help or information for our own “brain problems.”  I was a little startled to see they used the term “brain disease” in their goal statement.  When I read the accompanying article, however, I had to agree with use of that term.  It states “Physicians and researchers…now recognize that TBI is not just an event, it’s a disease—and its symptoms continue for much longer than previously believed.”

     It’s sad that the brain injuries of thousands of soldiers, athletes and notable people like Representative Gabby Giffords and Newscaster Bob Woodruff are causing the medical community to finally take notice of the long term effects of brain injury.  The rest of us owe them a heart-felt “Thank-you.”