Resource: CaringBridge: Personal health journals: What to share

How do you decide what information to share about your health or caregiver experience?

Sona Mehring, founder of CaringBridge.org, a "platform for personal health journals," expresses her thoughts on the value of journaling, and what information is appropriate to share.


Read her WebMD blog post in "A Different Normal: Living with a Chronic Condition" where she discusses Health Journaling: How To Decide What to Share

In her blog post, Sona Mehring references another blog on the benefits of medical journaling from Cancer.net. 

Her CaringBridge platform is a useful resource for patients and caregivers. Check out this resource.

Get Smart: Fight Chaos (a real message with a little humor: ok, an attempt at humor)

A "Smart phone" can useful
for "control."

All the gadgets in the world won't help managing life with TBI if clutter and chaos undermine our efforts.

The second law of thermodynamics guarantees that of the bad things that can happen to us all, the one thing that is certain is increasing chaos. Chaos is the only "plan" that manages its own progress automatically, and so chaos is everyone's default "plan" whenever no other plan exists. Chaos, unchecked, eventually results in death. Chaos is what always happens whenever "nothing" happens. Chaos never rests.

As the 1960's sitcom illustrated, it does not take a lot of skill or effort to fight chaos, but it does take consistent effort. When you feel you've "missed it by that much," at least you were fighting. This is a battle that is won by the agent who keeps showing up. Meet every challenge from chaos with the same positive attitude expressed by Maxwell Smart, who kept on fighting the good fight"...and loving it."  ...would you believe "and liking it?" Ok, keeping it up, and NOT liking it very much.

Two brain injury resources

Have you heard of Lumosity? - TBI SURVIVORS NETWORK:

'via Blog this'

I have just discovered these two brain injury resources today. The TBI Survivor's Network website provides resources for victims of TBI and their familes. Lumosity is a website that provides a set of tools designed to rebuild neural connections that have been lost due to TBI. Having no experience yet with either website, I'm just reporting they exist for now. I have provisionally joined both, and I will post my thoughts about each as I gain more experience.

Brainstorming4us > Home

Brainstorming4us > Home:

'via Blog this'

Some thoughts about logic and passion

Image courtesy of shutterstock

Over the years one of my areas of fascination has been artificial intelligence, and designing algorithms that mimic organic intelligence. Consequently, another fascination has been with how organic intelligence works. In this context, my brain injury has inspired the following speculation:

I have observed that organic intelligence follows one simple form of logic: A goes with B. It does not matter how A and B are related, or whether they are in fact related, as long as there is some sense in which B is found when A is involved, or conversely that B is never found if A is involved.

As I have implemented artificial intelligence principles in programs, they seem to find their best usefulness when looking for ways to locate information quickly. I found two ways to use comparisons to locate information quickly. The fastest way to find information quickly is when a mathematical relationship exists in which B can be derived or approximated from A. Mathematical relationships are not always obvious. Sometimes they are even coincidental. Organic intelligence makes no such distinctions, so AI should not care either. The next fastest way to find information quickly uses an estimation “tree” in which A goes with J (roughly central to the lower half of the alphabet) which goes with E which goes with C which goes with B. Five levels of association are usually not necessary in an estimation tree, because the trees are not designed to weigh all choices equally. Additionally, most estimations use mathematical relationships to estimate more wisely than random chance would allow. We know there are more C and S choices than J or Q choices, so we can weigh our guesses with that information. We can filter the possible choices to examine in a number of ways. In the estimation tree example above, a number of assumptions were made about the kind of data that would be searched. We “knew” that A and B are letters of the alphabet, which enabled us to exclude many other considerations.

In software, AI is used in specifically defined contexts. The brain similarly has ways of pre-filtering information. Visual information goes to one area of the brain. Auditory information goes to another area. Organic intelligence has many such hard-wired filters, and similar filters that develop over time through experience. These hard-wired filters enable us to avoid meaningless comparisons, but sometimes A is a letter of the alphabet, and sometimes it can be a number, so decisions must be made each time a filter is used about whether each filter is appropriate to the context.

rebuilding broken connections

When a brain is injured, some of these filters and connections are broken, forcing the brain to make extra decisions about the information it processes. This extra decision-making requires and can overload short-term memory, which can effectively stop the decision process, or create distraction “loops” in which the need to retrieve additional information at one step “overwrites” the decision process with a new decision process involved in retrieving information that will never be used because it's context was lost. A distraction loop is completed when the same external input re-triggers use of the same broken decision tree.

Keep in mind, all of this speculation is based on the experience of a programmer fascinated with AI, not based on any knowledge or research, but I have been able to write extremely fast index searching algorithms based on this model.

Since my accident, I have been using this model to consciously direct my thoughts to recognize and avoid broken thought paths, and to build new memories and associations. I expect that my conscious efforts will “prime the pump” and eventually enable my brain’s automatic processes to take over. Time will tell whether my approach will be successful.

I would add one more dimension to this discussion, that logic is “cold.” It does not care about values. However I am a warm-blooded creature with preferences and passions. Not all success can be defined in logical terms. Some choices can and maybe should be made on purely emotional grounds, but always with a watchful eye to avoid self-deception.

Ideally I would complete this thought with some profound principle, but I don’t have any profound ideas in this area: only a recognition that some “fallacies” create their own logic. Live human beings CHOOSE their beliefs. There is no logical difference between paranoia and optimism, yet one brings hope and the other destroys it. Some decisions are made because they feel better than the alternative, and that’s OK.


Articles that influenced this post:

Hagel, J. (2012). Reason with me: Why passion alone won’t save us. Design Mind, Passion(16), Retrieved from http://designmind.frogdesign.com/articles/passion/reason-with-me.html

Jana, R. (2012). The paradox of passion: Psychologist scott barry kaufman talks about the fine line between motivation and obsession. Frog: Design Mind, Passion(16), Retrieved from http://designmind.frogdesign.com/articles/the-passion-issue/the-paradox-of-passion.html

This is how is how it feels....

(I just posted this comment on Facebook, and it seemed appropriate to include it in this blog.)

Going nowhere fast

This post is really for me rather than for anyone else. It is to document a problem that happens from time to time, not quite frequently enough for me to identify it as a pattern. [...but then how do I KNOW it's not frequent...?] Once again, I started out looking up information to complete a project I was working on, only to stumble upon information related to another project. I spent the last hour completing the last hour completing that other project. Now I feel lost. All I know is that the original project was important. I can't recall what it was. I can't even recall what it was that I completed. I was feeling a real sense of accomplishment a few minutes ago. Why? What did I accomplish? This is what it feels like to have deficient short-term memory.

(I'm aware I repeated myself in the last paragraph. It's how I wrote it. I'm leaving it as evidence of the problem I was writing to describe.)


Image Reference:

McKenzie, R. T. (Videographer). (2012). Blatchford, coppinger, karwalski, treadmill push off court squash mental toughness.. . [Web Video]. Retrieved from http://www.youtube.com/watch?feature=player_embedded&v=jYcdQctgpY0

JNS - Journal of Neurosurgery -

JNS - Journal of Neurosurgery -:

'via Blog this'

Conclusions. Although mean diffusivity and fractional anisotropy abnormalities in these patients with TBI were too subtle to be detected with the whole-brain histogram analysis, they are present in brain areas that are frequent sites of DAI. Because diffusion tensor imaging changes are present at both early and late time points following injury, they may represent an early indicator and a prognostic measure of subsequent brain damage. (Inglese, Makani, Johnson, Cohen, Silver, Gonen & Grossman, 2005) 

In plain English, standard MRI's may miss early warnings of brain damage, that a more specific imaging method could have provided, possibly enabling subsequent damage to be avoided.

Subsequent damage to white brain matter can interfere with the ability to organize work and is associated with OCD tendencies. (Lochner, Fouché, du Plessis, Spottiswoode, Seedat, Fineberg, Chamberlain & Stein, 2012)


References:

Inglese, M., Makani, S., Johnson, G., Cohen, B. A., Silver, J. A., Gonen, O., & Grossman, R. I.
          (2005). Diffuse axonal injury in mild traumatic brain injury: a diffusion tensor imaging study.
           JNS Journal of Neurosurgery, 103(2), 298-303. doi: 10.3171/jns.2005.103.2.0298

Lochner, C., Fouché, J., du Plessis, S., Spottiswoode, B., Seedat, S., Fineberg, N.,
          Chamberlain, S. R., & Stein, D. J. (2012). Evidence for fractional anisotropy and mean 
          diffusivity white matter abnormalities in the internal capsule and cingulum in patients with 
          obsessive–compulsive disorder. J Psychiatry Neurosci, 37(3), 193-199. 
          doi: 10.1503/jpn.110059

Stay hungry my friends

By now nearly everyone has heard the slogan "Stay Thirsty my Friends." (2012) The principle behind the advertising slogan is sound. If we seek quality over quantity, we find fulfillment and not just satiation. One of the medications that were prescribed to help me focus is known to cause weight gain, and I have gained 40 lbs since starting the medication. I discussed this unpleasant side-effect with my doctor, who told me there is no easy answer except the obvious, to eat less and do more.

"Doing more" is how I got injured in the first place! I not only have to ensure I can exercise safely, I must also exercise in a way that assures others I will be safe. For the time being, that means my favorite exercise, bicycling, is off the table. I'm not going to offer suggestions about exercise today. I only want to make the point that the BEST exercise is the one you actually do, whatever that may be. Find that activity that you love to do, and do it regularly.

"Eating less" seems easier than it is. In my experience, saying "no" to something creates an obsession for it. I have found moderation and discrimination are far more effective than abstention when it comes to controlling appetite. Self control involves adopting a different attitude toward eating in general, and distinguishing between what is needed and what is craved.

The attitude I have found most profitable in controlling eating is seeking a little of the best foods, eating the healthiest foods when hungriest, and the choicest foods in small quantity, with the choice to always remain a little hungry, so the best foods can be fully appreciated. How do I maintain that attitude? I use an altered version of this advertising slogan:

"Stay hungry my friends."

Reference:

DosEquis. (2012). Dos equis: Stay thirsty my friend [Web].
          Retrieved from http://staythirstymyfriends.com/

Ideas about the brain in a social context

I'm told a recent EEG came back "abnormal" with "diffuse slowing." Now I have to wait a month for my next appointment with the neurologist to find out what that means... I figure "diffuse" means it isn't just a localized area that is slow. Somehow it makes me feel better to know the problem isn't just in my head.... (Let the reader catch the tongue-in-cheek double-meaning.)

I believe the literal meaning of diffused slowing is that reactions to stimuli are slower than previously recorded. It is the implications of diffused slowing that require a neurologist's expertise to interpret.

For years it has been my opinion that the medical profession oversimplifies their interpretations of brain activity, because they only measure activity. They don't measure the brain's activity in terms of efficiency. I think quite possibly less can be more where brain activity is concerned: but not always, which means the process is too complex for meaningful assessment by purely physical means.

(iStockphoto LP, 2010)

I also suspect that synapses (the electro-chemical connections between nerves that the brain creates as it forms associations between experiences and successful responses) extend into other dimensions that we cannot directly observe (not that we won't eventually learn how to indirectly observe them). Further, I believe any transfer of information between cells, including cells and cell clusters that don't specialize in information processing, is functionally equivalent to the transfer of information that occurs within neural synapses. Consequently, I think whole-body health and memberships in a variety of communities with other people are just as essential to mental health as brain function.

I believe I can function as a "whole" person even without ideal brain health if I make use of my external connections with other people and with external sources of information. The only limitation I see with this model is the limitation of trust and trust-worthiness within these symbiotic connections (or social synapses, as I like to call them). I believe I still have a lot of good I can contribute to others. I just need to figure out how to make and maintain those appropriate co-beneficial connections: an economy of thought, if you will allow the analogy.

All of these speculations are without substantial research to support or refute them. If any readers are familiar with research that would relate to my speculations, please let me know by commenting here, or send an email if you prefer. (My "About" section provides a means to send a private email.)

See Also: Social networks matter: Friends increase the size of your brain.


References:

iStockphoto LP. (Producer). (2010). Social network brain. [Web Drawing]. Retrieved from  
          http://blogs.scientificamerican.com/observations/files/2012/05/social_network_brain.jpg

Johnson, E. M. (2011). Social networks matter: Friends increase the size of your brain.
          Scientific American, 2011(11.17), Retrieved from
          http://blogs.scientificamerican.com/primate-diaries/2011/11/17/social-networks-matter/

Yet another TBI Blog: braininjuryselfrehabilitation

braininjuryselfrehabilitation:

In her own TBI Blog, BISR posts some "Simple tips on decision making when life is so indecisive after brain injury:"

The early years following injury may be difficult to make simple daily decisions.  Simple decisions are hard to make especially if you are given a number of choices. You may notice that many people with brain injuries cannot look at a menu in a restaurant.  They are overwhelmed with all the choices. (BISR, 2012)

'via Blog this'

Reference:

BISR. (2012, November 09). [Web log message]. Retrieved from http://braininjuryselfrehabilitation.com/2012/11/09/simple-tips-on-decision-making-when-life-is-so-indecisive-after-brain-injury/

Another TBI Blog: TBI Recovery | Whyteferret's Blog

I stumbled upon another blog dedicated to TBI Recovery:

Recovery from TBI is the most difficult thing I have ever done in my life.  In order to keep going, I need hope and courage.  I may never be the same person, but I can still have a meaningful, happy, life.   Hope for recovery; courage to face the adversity and accept what comes.  Knowledge to understand TBI and what it means to my life.

TBI Recovery | Whyteferret's Blog:

(Lydia H., 2012) 'via Blog this'

Reference:

Lydia H. (2012, March 14). [Web log message]. Retrieved from
          http://ferretrunner.wordpress.com/2012/03/14/tbi-recovery/

Personal Injury Guide Book | Jacobs, Grudberg, Belt, Dow & Katz P.C. | New Haven, Connecticut

Rather than copy large sections of this website which enumerate common misconceptions about how to proceed with an insurance claim after an accident, I'm going to link to the article instead. Pay special notice to the list of "myths."

Personal Injury Guide Book | Jacobs, Grudberg, Belt, Dow & Katz P.C. | New Haven, Connecticut:

'via Blog this'

In case the link changes at some point in the future, this is a link my backup copy of the article.

My Continuing Brain Injury Symptoms

Due to issues related to my ongoing attempts to get disability coverage, I am making a list of my continuing symptoms 17 months after the incident in which a car hit me.

Most bothersome on a day-to-day basis is extreme narcolepsy, feeling tired most of the time, with incidents of sudden unconsciousness, incidents of confusion and amnesia, and continuing incidents of lost gaps of time. Some of the initial symptoms, such as extreme vertigo have been replaced by lessor symptoms such as a "blank" sense of confusion when getting up suddenly or when seeing complex traffic motion on the road. 

Because of incidents of confusion, I have lost some of my independence. My daughter has full power of attorney and therefore must be involved when I make decisions that she could have to follow up. My kids have "threatened" that if I try bicycling for exercise my bicycle will "disappear." While I have found work-arounds for discalculia, and can often function nearly as well as I did before the accident, those periods of clarity are interrupted with disturbing periods of confusion. I still cannot organize work as I once did. I don't understand why, but a simple attempt to plan a job by outlining steps confuses me, and I invariably end up wandering from one unfinished project to another, accomplishing nothing until someone rescues me from my confusion by interrupting my cycles of jumping from one topic to another. This problem is difficult to communicate with others because the act of discussing the problem seems to hide the problem. Possibly some aspect of discussion provides just enough structure to prevent my mind from wandering so much. Sometimes I can write a useful essay (or blog post) in a single sitting, but usually I have to go over an essay many times before it is meaningful for others to read. 

On a good day, I sometimes feel as if I could try retaking the last class of my Master's program that was interrupted by my accident, but usually those times pass within a few hours, and they always pass when I try organizing notes to take action....

I'm really not offering any constructive suggestions in this post; I'm just reporting my experiences. Possibly I'll come up with some useful suggestions in the future, or at least have ideas for topics to be covered as I post resources.

I can always use suggestions from my readers. (hint)

Reference:

Traumatic brain injury. (2012). [Web Graphic]. Retrieved from
          http://ps.psychiatryonline.org/data/Books/silv2/silv2_c020f002.gif

Some thoughts about memory

“A clear conscience is the sure sign of a bad memory.” ("Quotes by Mark Twain", 2010)

As I was looking for a better reference for this Mark Twain quote, I encountered a number of cinical views about memory. Some were obviously false, but they caused me to ask myself what I believe is true regarding memory.

("Wikipedia: Memory," 2012)

I believe all memory boils down to a collection of sensory "tags" of sights, sounds, smells, and textures along with the ideas we associate with them. I believe what we call "event" memory is very short-term: fogotten forever within minutes of the experience. What we call long-term memory is actually a confabulation built from the tags we created for that event.

Memory therefore depends on our ability to be fully aware of each moment; consequently, distractions are the enemy. Remembering is literally "re" + "membering," or reconstructing the body of a memory from its tags. It requires having lots of available tags or points of reference, and preferably lots of different kinds of tags. If you are experiencing a moment you never want to forget, take a moment to notice your surroundings. What sounds to do you hear? What colors do you see? What fragrances do you detect? Take a picture. Make a recording. Write a note. What you write is not nearly as important as THAT you wrote. Enagage yourself fully in each moment, and you will never have a lack of associations with which to reconstruct that moment.

When you sit down to read, take the effort to notice your surroundings. If your surroundings don't provide tags for all of your senses, have a cup of coffee (or your favorite equivalent) to add aroma and flavor to the associations you will create as you read.

Read as quickly as you are able with comprehension, so that your mind focuses on ideas rather than words, and take frequent breaks to ruminate on what you have read. When you recognise you are forming an association, respect the process and let your mind wander a little (but not too much).

Don't neglect social connections (synapses) as tags for your memories. Even when brain damage destroys some of the tags we have associated to reconstruct events (and everyone is at least a little damaged), our shared tags are remembered by others, and by spending time with friends, over time we can replace some of those lost connections. Never neglect involving others as you form your memories. Talk about your day with someone every day.

http://dictionary.reference.com/browse/confabulation

Since every memory is a confabulation, make sure your important memories can be documented. Every person should keep some sort of journal. A journal does not have to be a reflection on the day. It can be as simple as keeping your old appointment books, or a dated scrapbook of old bits of paper you create and toss. Don't keep everything, but don't discard everything, but DO avoid clutter. What you keep must be organized, or it will distract you, and rob you your memories rather than supporting them. Whatever your process may be, the process of organizing your thoughts is more important than what you actually record.

References:

"Quotes by Mark Twain." (2010). Quote factory. Retrieved from
          http://www.thequotefactory.com/all/quotes?author=mark-twain&max=10&maxsteps=10&offset=90

(2012). Wikipedia: Memory. (2012). [Web Graphic]. Retrieved from
          http://upload.wikimedia.org/wikipedia/commons/thumb/5/58/Memory.gif/400px-Memory.gif

Some observations I have made

I was just musing over the fact that most people who know me have an unreasonably positive outlook about my current situation, for the simple reason that if I were not at my best, they would not see me!

I have also mused about the "fight or flight" reflex, adrenaline, and stimulants. This line of thinking is not original. My counselor brought it up, but I also have thought about it. What does that fine line between "fight" or "flight" consist of? I have observed that a little anger is much more effective at "waking me up" than all the stimulants I take. I have also observed that just a little anxiety is often present when I can't stay awake. Hmmm.

Any readers brave enough to advance an opinion?

Thank-you notes I need to write



A Thank-You Note Tutorial (Bell, 2011)



If anyone would like to send an anonymous reminder to me of people who need to hear a "thank you," please use this email address to send a note

Thank-you notes I need to write:

'via Blog this'

Graphic was blatantly stolen from:

Bell. (2011, April 06). [Web log message]. Retrieved from

http://www.caphillstyle.com/capitol/2011/4/6/the-hill-life-a-thank-you-note-tutorial.html

My Social Security Disability Appointment yesterday

I'm not going to stop trying to find ways to accommodate my new limitations, and I'm not going to lie when being tested. Hopefully, the testor will report the WHOLE picture...

Read more: My Social Security Disability Appointment yesterday:

'via Blog this'

The Paperwork Reduction Act of 1980 and the Law of Unintended Consequences

... enforcement of a law designed to reduce paper requires the production of AT LEAST double the paperwork PER FORM.

Read more: The Paperwork Reduction Act of 1980 and the Law of Unintended Consequences:

'via Blog this'

Continuing Symptoms Update

September 25th, I wrote a blog entry (Lloyd, 2012, Sept. 25) summarizing my symptoms since the accident. Today's notes were written to supplement that entry and to summarize what has been going on with my brain injury symptoms and general health in the past week, as I prepare for three medical exams in the next two days. Frequently, when asked, I draw a blank, and give the impression I may be doing better than I am. This time I'm writing everything down in advance of my upcoming appointments. (Names and addresses were removed from this edited version of my notes.)

(Lloyd, Dream. ©2009 All rights reserved.)

A week has passed without relief from constant gagging, because I still cannot swallow normal sinus drainage. I can drink water. I can eat food, but since the accident, gagging on mucus has become a constant source of discomfort. I frequently feel as if I cannot breathe. It frequently takes me to the edge of regurgitation.

My lower back hurts. Other joints hurt also. I continue to have lower G.I. bleeding, for which I have another pre-colonoscopy consultation scheduled. I started my day this morning washing blood out of the clothes I wore last night.

I feel sleepy, as usual. As I write, (at 8:39 am) I have already been shaking my head and slapping my face to stay awake. I want to complete at least one task before taking a nap.

Lost A Day and Other Difficulties (also referred to as "The Wal-mart Incident.")

I keep wanting to believe I'm recovering from this brain injury, but the evidence keeps mounting that I'm getting worse instead. Some things are obviously better. My focus has improved, as has my writing, but incidents of lost time are increasing (or am I just noticing them?)

I was just gathering files I would need for a Monday morning meeting with a financial consultant when Laura asked me what I was doing. I told her I'm gathering materials tonight, and I will sort them Sunday so I'll be ready for the meeting Monday morning. Laura said, today is Sunday. I started to argue, but she described the church service I missed this morning. Confused I said, what happened to Saturday?


(ShaneS429, 2009)

What It Is Like To Have Narcolepsy/Cateplexy

I found a vlog with a very clear description of what it is like to have narcolepsy. I posted this response:

Thank you for posting your experience. I had narcolepsy under control with a combination of Provigil and a CPAP machine until one day a car hit me while I was bicycling for exercise. Now I never get by without sleep more than 2½ hours. I am familiar with wakeful dreaming, and lost hours (even one whole day I could not recall). I do fall down drooling sometimes, but I'm asleep when that happens. Your clear definition of cataplexy eliminates that diagnosis for me.

Reference:

nololtoday. (Videographer) (2010). Narcolepsy with cataplexy (version 2.0) [Web]. 
          Retrieved from http://youtu.be/3O-mBCYrJHk

Balancing Respect for Self and Others

Today was not a good day. In fact, I have not had a good day since Friday. I've been feeling frustrated with the people who are supposed to be helping me get past my limitations, mostly because they don't listen to specific details I discuss. This week, I have heard repeated excuses about how something that went wrong was not anticipated, yet they were topics I anticipated and discussed (with notes to prove my case if I were inclined to make such a case). I'm also frustrated by how people use my limitations to cover their shortcomings, by arguing I said things I did not say, or vice versa.

I have recordings of my conversations, and I can prove that my recollections are correct. On one hand, the recordings are useful for maintaining self-confidence, but on the other hand, I value the help and encouragement from others more than I value winning arguments.

Sometimes it is difficult not to force an issue for the sake of pride. Of course that's when I'm most likely to be wrong....

There is a delicate balance between maintaining self-respect and self-confidence, and putting others down for no good reason.

Reference:

Dobson, J. (Producer) (Jul 9, 2012). Family talk: The need for self respect [Web]. Retrieved from
          http://www.youtube.com/watch?v=8vLxAmcwrSU&feature=colike

Evernote: A 0-to-60 MPH Guide

Evernote: "Remember Everything"

Evernote: A 0-to-60 MPH Guide

I still plan to write a blog entry about Evernote, but this article I stumbled upon does a good job of explaining the value of Evernote to a person with memory difficulties. the slogan "Remember Everything" is truly appropriate to this software.

The beauty of Evernote often appears to be its downfall to people who are first investigating the program. Evernote PURPOSELY prevents hierarchical structures in the way it indexes information, choosing instead to create its own keyword index in addition to keywords supplied by users. Keywords allow finding information by association, the way our brains naturally index information. Evernote does allow grouping notes into notebooks, and of notebooks into "stacks," but the purpose of notebooks has to do with maintaining security while sharing access to individual notes and groups of notes, and the purpose of "stacks" is to group various project activities together. Stacks are unrelated to  issues of security.

It is generally best to leave notes in one big common area, and to use filters (similar to a Google search) to view related notes. Incidentally, I can include my notes as targets for Google searches. Frequently I search Google for something I already read. Including Evernote in my searches increases the efficiency of these kinds of searches.

'via Blog this'

Support Groups: The Brain Injury Association of Indiana

Support Groups: The Brain Injury Association of Indiana


The Brain Injury Association of Indiana is a support group for victims of brain injuries and their families. Since I cannot currently drive until my difficulty with narcolepsy is under control, I have been unable to attend meetings in Fort Wayne, which until now has been the closest location, but support groups can be a very useful way to find resources and understanding encouragement.


Check out local support groups in your area. Ask your local hospital if they have information about a local brain injury support group. Please post comments with the information you gather. Soon I will be creating a "static" website with these kinds of resources, and I will appreciate and acknowledge any contributions from the readers of this blog.


'via Blog this'

Continuing Symptoms 14 Months After The Accident

Starting on a positive note, I have experienced Improved Focus (at least two hours a day while I'm fully awake) in the last week. I believe the improvement has remained long enough that I can count it as a real improvement. I believe this improvement was made possible with the help of a new prescription I recently started taking, Abilify, 2 mg. I have found improved ability to focus, to the point that while I am awake, I sometimes feel as competent as before the accident. Unfortunately, my psychiatrist also decreased the level of stimulants I take, resulting in frequent mandatory naps resulting in fewer productive hours.

Everybody hurts sometimes

Sometimes bad things happen.  Currently, I am in the somewhat painful process of reconciling myself with the fact that not all unfair situations have a clear antagonist who can be properly blamed for any particular situation. There is not always someone to blame, and worse, looking for someone to blame only spreads the pain to others, and could actually make ME the one who is to blame for another person's pain.

For this reason, I have been careful to not identify caregivers when I complain about unpleasant events in my blog, and I intend to continue this policy. I do feel a level of compassion for those who have to endure people like me who have had bad experiences and are naturally looking to blame others when things go wrong for them. While I'm struggling to find a proper expression for my own anger at the moment, I recognize there are others who endure the anger of others like me for no good reason, other than that they had the courage and will to help, even when those they help are not appreciative and understanding as we ought to be.

When difficult times come, it always helps me to imagine myself in the other person's shoes and to experience their viewpoint as well as my own. Each person has more than enough trouble of their own, so be thankful when things go well, and try to be understanding when things don't go as well.

This is my advice to myself. I hope it helps others also. What do YOU think?

Symptoms: Lost two hours today

In anticipation of a doctor's appointment this morning, I was focused on making sure I had a list of Betty's meds handy, and the paperwork related to the at-home doctor visit for my wife. I was concerned about whether I would be able to remember whatever the doctor said during his visit, but he mostly took notes and interviewed Betty. After he left, I "crashed" mentally. As soon as I had completed writing notes to myself about the appointment, I recall my last thought was about what to fix for lunch. Then I "suddenly" woke up, having lost two hours. Still sitting at the computer, I posted the note above before I got up and took a proper nap which lasted until about 4:30 today. I never did remember to eat lunch. I have had a number of long "gaps" in my days recently. I assume I'm generally asleep during those periods, but on at least one recent occasion, I lost 5 hours, and had vague disconnected images in my mind of hunting for my Kindle reader. It had been lost, but when I regained consciousness, it was on my bedside table where I seemed to recall having purposely set it so I would find it when I was awake. That incident was a bit unsettling. I'm not sure what to think about it, but since it has been the only incident in which I know I was active while unconscious, I'm not too worried.

Imagining the dynamics of a closed-wound brain injury

I created this image this morning as I attempted to better understand the areas of my brain that would have been directly affected by my accident. My lack of knowledge of anatomy may be showing in this picture which superimposes a photo of me after the bicycle accident over an image of the brain. Initial impact does not necessarily predict where lesions in the brain may exist, since the brain floats inside the skull in a thick fluid. Rapid deceleration caused by the impact of an auto accident can cause the brain to rotate and bounce around inside the skull, injuring various areas. My affected areas appear to be the center left side, with secondary areas (due to rotation and "bounce" to the rear right side of the brain.

Big Bad Ideas: The Value of Arguement

Initially I thought of this post as extolling the value of social interaction to healing of the brain. I still suspect there is a connection, but when I reviewed what I had written, the post seemed to lack continuity, and it seemed to be more about relating essay writing (blogging) and aesthetic principles. So I decided to move the post to a more appropriate venue and simplify it at the same time. 

Big Bad Ideas: The Value of Arguement:

'via Blog this'

The Value of Arguement

I love arguing with my 18-year-old daughter. Since she is “officially” an adult, she feels free to express her disagreements with me, but she does it respectfully, and I make sure the respect goes both directions. When we argue I can feel something waking in the back of my brain that I think needs to be awakened more often. I’m not sure what that spark is, but I have no doubt this gentle father-daughter sparring is exactly the kind of therapy my healing brain needs.

Today we argued our views about the on-going dilemma of how to feed a cat that is never satisfied. It became obvious we both understood each other’s positions, and we didn’t agree. I think we should measure the cat’s food once each day, and use what was measured to feed him a little as he requests it, knowing that many of his requests are actually requests for attention. I think at the end of the day, when we head to bed, we should set the bowl on the floor and restart the cycle in the morning, and I think she would agree with me to that point. Where we disagree is on what to do when the remaining amount was not given to him the night before. I just start his new measured amount once the bowl is empty, knowing that if we measure his food once each day, that his average intake will be appropriate. My daughter prefers to add just enough food to the bowl to meet the new day’s amount. To my daughter, yesterday is history, and today is all that matters. She believes her method will enable our cat to loose weight faster. I’m sure she is correct, but I am equally focused on the cat’s enjoyment as I am on his health, and I think it is nice to give him the entire amount due, with less focus on when we measure his food each day.

Yesterday’s sparring was about my daughter’s English class. She finally had enough, and said she needed to leave the room to avoid getting upset. It was a minor clash. I would not call it a disagreement. Her tone was respectful. I think an eighteen-year-old adult needs to establish her own boundaries, and the parent of an eighteen year old adult needs to gracefully accept healthy expressions of independence as a GOOD thing; although, sometimes it is hard to let go of the former parent-child relationship and to embrace the new adult-adult relationship that must replace it.

I asked my daughter about how school has been going for her. As we discussed various classes she is taking, She mentioned that her English class is writing daily essays. That struck my interest, because as a home-schooling parent, I had taken pride in the writing guidance I provided to my students. We used the textbook “The Lively Art of Writing” (Payne, 1965) which teaches that a well-written essay explores its topic by comparing and contrasting two sides of a “controversy” expressed in the thesis sentence. I won't try to represent my daughter’s view because it is likely I did not fully understand  her view well. and I don’t want to misrepresent her perspective. I’ll stick with what I know, which is my OWN view. 

First, there are multiple valid ways to write an essay, just there are multiple styles of music. The chromatic structure of Wagner or Debussy is as valid as Bach’s strict adherence to forms and scales. These structures each work to form the backdrop of their respective compositions, and while Bach might call Debussy “wrong” for his anarchical tendencies, I believe he would have been as enchanted by Debussy’s art as Debussy was, no doubt, envious and respectful of Bach’s mathematical precision. Today it would be wrong to judge either composer’s work on the basis of the other's perspective.

Essays are as much an art as music. They are aesthetic expressions, and as such, their value is found in how successfully they draw the reader into the writer's contextual backdrop to identify with the thesis or to reject it. A great writer makes the reader see new perspectives. A balanced presentation of facts creates the aesthetic backdrop of the  essay, and the opinions that are expressed, compared, and contrasted create the tension and release that makes the writing interesting and worthwhile.

(For more about my aesthetic ideas, see my previous essay on aesthetic meaning and value at  http://rechargepoint.blogspot.com/2012/08/aesthetic-meaning-and-value-in-arts.html.)

Reference:

Payne, L. V. (1965). The lively art of writing. Chicago: Follett Pub. Co.

5 iPhone Apps You Should Be Using | John Fick Tech

One of the most useful resources I have found in my struggle with short-term memory loss has been smart-phone applications. I don't use an iPhone. My phone is an Android, and I will highlight a few "essential" Android apps in future posts, with Evernote a central part of my evolving plan, because it ties the output of my other applications together into my own personal searchable repository of knowledge.

5 iPhone Apps You Should Be Using | John Fick Tech

'via Blog this'

I AM NOT A DOCTOR

... nor do I play one on television

Disclaimer to my disclaimer: As I discussed the importance of citing sources in this post, I continued to fail to properly cite all sources. I have at least provided links, but links are not a substitute for properly sourced material. I INTEND to properly cite all sources in all posts of this blog in proper APA style, as time and my capabilities permit. I also intend eventually to publish a bibliography of sources, broken down by subject areas, in the form of a series of literature reviews.

This post is a disclaimer. As I consider writing about various topics that will require some research, I intend to hold myself to the highest academic standards, to ensure that the information I provide is accurate and trustworthy, but I am writing this blog because I recently suffered a brain injury, and my judgement and actions don't always meet my own standards, so I must ask my readers to help me to maintain academic integrity, by holding me accountable to my own standards, posting comments when necessary to keep this blog, and eventually the entire resource website, trustworthy and authentic.

I never intended to get as personal as I intend to get in this post, but understanding the author's perspective can be helpful in evaluating the usefulness of information and opinions. Over the years, people have expressed the opinion that I am "brilliant" and "knowledgeable," but the fact is, my "superpower" is my imagination. I invent what I don't know or don't remember, but then I verify the information before I disseminate it to others. My constructed knowledge of how things work is generally accurate, so my invented "facts" can usually be documented with little difficulty. My backward method may be cheating, I suppose; some might call it lying (I would NEVER make up facts that weren't true!), but I justify my approach based on my obsession with continuous self-checking and documentation of sources. Sometimes I refer to this process as a "reality check," because unchecked confabulation would undermine the usefulness of this project.

Outbursts of anger may be symptomatic of TBI,

but they do NOT EXCUSE mistreating people

Disclaimer: When I started this blog, I made a decision to avoid mentioning names of medical providers until I consider myself as “recovered” as I’m going to get. That choice is because I realize my own perspective changes over time, and the stages of my recovery affect those perspectives. I don’t want to assign inappropriate blame. In keeping with this principle, I intend to obfuscate details that could allow identifying individuals or organizations. On the other hand, in the end, I hope to be able to commend some of these providers who have helped me, following the principle I used as a parent, to praise in public and correct in private. Today I have an unhappy experience to describe, and so I will be on-guard to ensure the innocent and the guilty are equally protected from identification. I also intend to be very clear that no circumstances justify mistreating other people. Even shouting at someone is a form of violence, and is unacceptable.

I have been told that outbursts of anger are a common symptom of traumatic brain injury. (Rao, Rosenberg, Bertrand, Salehinia, Spiro, Vaishnavi, Rastogi & Noll, 2009)

I have NOT been told, nor would I accept, that TBI is an EXCUSE for mistreating fellow human beings, regardless of circumstances. Shouting at another person is a form of violence and is unacceptable under any circumstances, and I am ashamed to admit, I failed to control my temper today.

Why yes, I AM brain-damaged! How astute of you to notice!

"Why yes, I AM brain-damaged! 
 How astute of you to notice!
 Were you run down by a car too?"

(I thought about saying that, but instead I said, "thank you for your help," with a smile.)

NOTE TO SELF: It is probably NOT a good strategy to voice your thoughts to stay focused while in public.

Symptoms approximately one year after the accident

I broke my glasses recently and my daughter repaired them for me. She said not to worry. She knows how I value my nerd image... I actually used a modified version of her idea with the soda straw (with black electrical tape) for a couple of days, but I had Jonathan pick up another pair of cheap reading glasses, I popped out the lenses, replaced them with my own, and now they look better than ever!

Following instructions I found online, I microwaved a small bowl of detergent-water to use to soften the plastic before exchanging the lenses (not hot enough to scald, but almost that hot). 
http://t.co/sQe5bYlH

My expression in this photo really captures how I feel most of the time when I'm "awake." It's not a bad feeling per se, but I'm clearly not fully awake. Keep in mind, this is my state after taking an unheard of 500 mg dose of Nuvigil PLUS 70 mg of Vyvance, 200 mg of caffeine, hormonal supplements, 3 grams of Niacin (NOT non-flushing, but the kind that makes you tingle all over) and listening to binaural beats designed to pace brain frequencies in the range known to be associated with attention, intelligence, and creativity!

I would think most healthy people would be so wired with what I'm doing that they would be jumping out of their skin, but most of the time, I'm just awake enough that I can read and talk with only a little difficulty, and I can accomplish tasks as long as I have someone helping me periodically to focus and move forward.

Prioritized action list for the memory impaired

This list is subject to change and improvement. The goal is to make the list useful by keeping it simple.

1. Review schedule first each day
2. Review tasks second each day
3. Maintain a paper list of ideas and commitments as they come up, before doing anything else
4. When unrecorded time commitments exist, they must be recorded before anything else is done, with alarms and at least one secondary plan to keep the commitment, such as a partner who will also get the reminder.
5. Keep a repository (a file or a repository of scanned items) of new mail and messages that cannot be ignored. Throw away items that can be ignored. (Allen, 2002)
6. Distinguish between remaining items that need action versus items to be archived for their information. (Allen, 2002)
7. Schedule action for items that need action, and followup for items that need followup. 
8. Index (tag) items in the archives
9. Write a daily task list
10. Keep a journal of activities. Index (tag) journal entries.

Reference:

Allen, D. (2002). Getting things done: The art of stress-free productivity. (Kindle ed.). New York:
          Publisher: Penguin Group (USA) Incorporated.