Just another manic Monday

Monday, July 29, 2013

This is the first morning in about a week that I can tell that my brain is not fully awake, yet I'm functioning enough to post here. I've been trying to keep daily records of my progress, but one of two things keeps happening: either I'm SO capable first thing in the morning that I think I have too much to do to waste time journaling (and thus I later have no recollection of such days except a vague recollection that I was feeling too good to bother with journaling) or, I feel too sleepy, never fully wake up, and after a few essential tasks are completed from my morning task list, I absent-mindlessly go back to bed.

Friday was an especially bad day in that regard, because it seemed to start out well, but when I took a nap around noon, it was suddenly 6:00 am (so I thought). Actually it was around 6:00 pm Saturday. I took almost two hours to accommodate the concept that it was evening, not morning. I never did understand it was not still Friday, so imagine my surprise after I allowed my self to sleep in Saturday morning, when I was told I had missed Church!

This morning, when Jonathan mentioned it was Monday, my head started spinning, and I seriously considered going back to bed, but I decided, no, this is a day I must make things happen, meet the goals I set for myself last week, NOT miss any appointments. and so on and so forth.... (I've heard that phrase somewhere. I'm not sure what it means.)

Right now, I'm getting out my "morning" list, and I'm going to make sure everything on it is accomplised, including making a list of things to do today....

Jennifer Stokley: LAZY, LAZY DAY

Jennifer Stokley posted these remarks in a private on-line support group for people with brain injuries. I thought her comments did a good job of describing the most common symptom of mild traumatic brain injury, which is fatigue, thought to be caused by a combination of a flood of excess neurotransmitters released by dying neurons, and by the effort it takes for the brain to do relatively simple tasks, when so many pathways have been lost due to microscopic tearing of axons throughout the brain. (2011)

I asked her permission to repost her comments here:

Reference:

Erdman, J., & Oria  Laura, M. and P. (2011). Nutrition and traumatic brain injury:
          Improving acute and subacute health outcomes in military personnel
          (Paperback.). The National Academies Press. Retrieved from
          http://www.nap.edu/catalog.php?record_id=13121

Resources for Traumatic Brain Injury: A couple of interesting personal discoveries about memory of facts and events

Resources for Traumatic Brain Injury: A couple of interesting personal discoveries about memory of facts and events:

"while pondering how remarkable it is that I can remember recently learned facts, but not events, was in recognizing that I have recently had a number of arguments with my kids when I am annoyed they don't know something I know, and the argument always comes to me recalling an event associated with the knowledge that all three kids insist never happened. Further, I have been able to recognize evidence of me making foolish choices in the past because I DID NOT KNOW that crucial information at the time. Soooo, apparently, in order to remember facts, I am inventing personal history on which to "hang" those facts, "

'via Blog this'

A couple of interesting personal discoveries about memory of facts and events

This morning, I awoke with an inspired understanding of some recent events, and consequently, I made a couple of interesting discoveries about myself.

One is that my ability to navigate a simple file structure on a computer is dependent on the familiarity of the colors used by the display. If the "wrong" colors are used, I am confused, and cannot read or make sense of the file structure, but if the elements of the display are familiar colors such as black, gray, and shades of blue, I do fine. The same structure composed of shades of green looks totally foreign to me, and I cannot discern what I am seeing.

The second discovery I made, while pondering how remarkable it is that I can remember recently learned facts, but not events, was in recognizing that I have recently had a number of arguments with my kids when I am annoyed they don't know something I know, and the argument always comes to me recalling an event associated with the knowledge that all three kids insist never happened. Further, I have been able to recognize evidence of me making foolish choices in the past because I DID NOT KNOW that crucial information at the time. Soooo, apparently, in order to remember facts, I am inventing personal history on which to "hang" those facts, since my event memory since my accident in 2011 has been extremely deficient, and until very recently, I have had no event memory at all, depending on my journals (and the process of writing those journal entries) to remember personal history. Until recently, I was claiming I had no event memory since my accident, except for a short window around immediate events. I can usually recall enough things about the last few days to get by, and though my event memory going back a couple of weeks is very limited, I can even get by discussing what happened in the last couple of weeks.


However, when my daughter Audra was talking with me about the recent Superman movie, I told her I hadn't seen it. She reminded me we went together to see it on her birthday. I clearly remember that we went to a movie on her birthday, and that I enjoyed the movie. I even remember "facts" learned within the context of that movie that relate to my understanding of the various Superman stories, but I connect those facts to various Superman cartoons and television shows like "Lois and Clark" instead of realizing that the ideas were first presented in that movie I "never saw."

I hang my hope on my own recognition of this deficiency, and on the fact that my event memory does seem to be improving. For the last two weeks, I can remember the first few hours of every day. However, each day feels like it lasted about three hours....

Technology, Coaches, and rehabilitation.

This video demonstrates how technology with the help of a coach can help a person with Mild TBI function normally, in spite of short-term memory and attention difficulties.

Coaches serve an important role with a person with attention, memory, and awareness difficulties. I meet informally with a friend, who once a week, discusses my plans and makes suggestions on what to delegate or abandon, so that priorities can be handled. He also goes through my mail, making quick decisions and marking items as trash, "scan and toss," (my Evernote software indexes scanned documents so I can find them. It can also schedule when I look at those documents). Even with his help, I have difficulties sometimes.

What the video does not show are the every-day difficulties that happen when equipment does not work as expected, when alarms for less important events cause distractions that are much more serious than the problems they were designed to solve, or when unrelated but intermittent difficulties such as sudden disabling vertigo suddenly make walking impossible. Personally, I have to continuously monitor my level of awareness (for which I use technology). When I my level of awareness drops below a certain level, I become confused and disoriented, looking for a car I used to own years ago, or more commonly, knowing I'm forgetting something important distracts me from what I'm doing at the moment.

There have been times when I start noticing time "gaps" in which the fluid motion of other vehicles on the road seems to be replaced by a set of still images in which cars "jump" ahead a few feet at a time.
For that reason, I avoid driving at highway speed, and no matter where I am, I pull off the road and take a nap if I realize I my awareness is faltering. I use guided relaxation recordings (also a use of technology) to help me rest, and to get back to my responsibilities quickly. If I catch myself loosing awareness, I can usually stop, take a ten or twenty-minute nap, and be functional for another two hours before signs of lost awareness creep up on me again.

Work, employment, profitability, and disability

Understanding full disability after a brain injury

The ability to "work" is not necessarily the same as the ability to live independently.

In a support group, a friend made the following comments, which I have paraphrased to protect his privacy:

I have been faithfully doing brain exercises daily, and recording my scores in a spreadsheet. In many categories, my scores have improved, but math scores remain weak, and it is discouraging. Also, it is misleading to say I entered them is a spreadsheet. I spent hours creating a simple spreadsheet that should have taken a few minutes. Have other people experienced this kind of problem? My work is fine for what it is, but it won’t stand against what other people take for granted. (private source)

I replied to his post (with minor editing to protect privacy):

Yes, I have noticed the same things you mention. It's not so much that I cannot do what I could do in the past; the problem is the amount of time it takes. I can easily spend ten hours researching a simple topic that would have taken 15 minutes before my accident. With over two years of time spent intensely studying MTBI and work-arounds, and writing about what I've found, and doing practically nothing else with my life, AND if you catch me on a good day when I'm able to speak articulately, I can look very capable and intelligent, and it gives the impression nothing is wrong. How does one explain intermittent problems? How do I explain that the list of symptoms my Lawyer asked me to produce, that the average person could have assembled in a few minutes, took six hours for me to create (over three two-hour session with naps in-between), and was only possible because of the notes I have carefully indexed over the last two years? (private source) 

I can do anything an uninjured person can do, if you allow enough time. What I cannot do, is produce results within a profitable time-frame. (private source) 

Another thing most people won't understand, is that one of my symptoms is an obsessive desire to get better that drives me to do nothing other than research. No normal person could stay sane devoting themselves to this level of research. No one but a fellow brain-injured person comprehends the level of effort that is required to produce 15 minutes of results in ten hours. (private source)

Tororei (2009) defines work as the production of something of value through physical or mental effort. While work can be rewarding in terms of personal dignity, it does not necessarily provide a physical means of survival.

Torerei credits Quinn and Degener (2002) for defining employment as work that produces a physical means of survival.

Current disability law in the United States focuses on work rather than employment, and well-intentioned laws designed to ensure accommodation for the disabled actually tend to discourage employment of the disabled. In theory, employers are required to maintain a 5% disabled work-force, but the absence of incentives or compulsion effectively nullifies this requirement, while voluntarily hiring a disabled person actually puts employers at risk of inadvertently committing expensive violations of the various laws such as the Americans with Disabilities Act. (Tororei, 2009)

The failure to define work in terms of profitability actually results in less employment for the disabled, and higher costs for Governments providing disability benefits. Some suggestions on how to create a disability program that works to reduce Government welfare costs while also reducing the strain on the private sector, is to study individualized ways in which disabled persons can do meaningful work at a reasonable pace, within a reasonable time frame.

Cookie-cutter approaches that attempt to place disabled persons on assembly lines that could be more efficiently run with robotics is neither profitable for employers, nor fulfilling for workers, but incentive-based subsidized jobs that can be done from home on a variable scale would be ideal, equalizing costs for employers, reducing costs for Government, and providing personal dignity for the disabled.

References:

Lloyd, D. (2013). Private support group conversation. (Notes are available to qualified
          professionals who will sign a non-disclosure agreement).

Tororei, S. K. (2009). The right to work: A strategy for addressing the invisibility of
          persons with disability. Disabilities Studies Quarterly: The First Journal in the
          Field of Disability Studies, 29(4), Retrieved from
          http://dsq-sds.org/article/view/973/1174

References of references:

Quinn, G., Degener, T.,(eds) (2002). Human Rights and Disability: The Current Use
          and Future Potential of United Nations Human Rights Instruments in the Context
          of Disability. Office of the United Nations Commissioner for Human Rights,
          United Nations, Geneva.

Optimistic realism

I received this encouraging note from a friend who knows that before my accident I was a perfectionist (tyrant) who was never satisfied. It was written in response to a comment I made expressing frustration that my counselor said I needed "fluid" expectations of myself that I can adjust on a daily basis. That advice is so contrary to my natural mindset that it made no sense to me at all, but my friend found a way to make that advice useful. I think her words of encouragement are applicable to all of us:

Joy wrote: "for "perfectionists" that is a very difficult to attain. being optimistically realistic is the key. know your limitations, strive to do your best, celebrate when you have surpassed them, don't beat yourself up when you don't achieve them. each day, each circumstance is a separate account. accepting that you are who you are now and because of the accident, you cannot compare your abilities to what you wish they were. it is a journey and a learning process. i am confident you will find this place. just remember that it will take some time to readjust. :) you always have my prayers!"

Evernote Web: "TBI Effort Like Moving Mountain"

Evernote Web: "TBI Effort Like Moving Mountain"

1. David Lloyd shared a link 

   about a minute ago
   

   
   

   This is an excellent video describing the experience of people with TBI.
   
   While the "moving a mountain" illustration would be an exaggeration if I had said it, there certainly is many more times the effort involved in every simple action since my brain injury; every sentence has to be worded carefully and consciously to work around words that can't be found, to catch myself substituting unrelated words that have no obvious connection with the word I want to use, and to explain the use of "compromise" words that don't communicate as effectively as that "right" word that I cannot find.
   
   I think it would be accurate to say that every sentence I construct has required ten times the effort it would have required before my accident. Consequently, I speak slowly sometimes. I pause a long time before I respond. I start to say one word and awkwardly "slur" its pronunciation into a more appropriate word, sometimes with rather embarrassing results.

   
   

   Traumatic Brain Injury Effort Like Moving Mountain

   www.youtube.com

   http://www.tbilaw.com We ended with Steven and Bill as we do all of our interviews. What parting words do you have to make the world a better place for those...

   
   

'via Blog this'

Tips to remember names

(Jennifer Stokley, a fellow member of a private on-line support group for brain-injury survivors and the people who care for them, posted this link for the group to see, and I am passing it along for my readers.)

When our brain's automatic association of new experiences with our existing "framework" of life experiences fails, we can consciously help the process along by consciously forming associations to help us remember. This short video illustrates this process.

Stop the Pushers | An open letter.

Malware is a problem that affects everyone, but it can be especially harmful to people like myself who depend on computers to accommodate health problems such as brain injury. Today I hope to bring an end to this plague on computer users by taking away the financial incentives for software publishers to push unwanted software that changes settings, often disrupting how other software works, especially software that helps brain-injured people like myself to function on a daily basis.

Stop the Pushers | An open letter.

realnetworks.com

 

Updated Today

RealNetworks, Inc.462 7th Avenue, 3rd Floor
New York, NY 10018

Dear Sir or Madame,

I was just about to allow an automated update to my realplayer when I noticed a pre-checked box authorizing installation of malware. This behavior on your company's part ought to be illegal, and I am posting this open letter on my blog to encourage other people to;

1. Publicly report all "updates" that push unrelated software
2. Write their congress person requesting this kind of activity be made explicitly illegal, with a provision for victims of pushed software to sue both the company that pushes unrelated software, and the company whose product is intended to be pushed, even if that company is the same company providing the update.
3. Write the offending company to demand that advertisements for other products may only be posted on update screens in a periferal area of the screen in a smaller and dimmer font that does not match the appearance of any fonts used to describe information about the update.
4. Not to install any update that attempts to push other software with pre-selected defaults to install.
5. Uninstall any software that cannot be updated without having to unselect an "option" to install unrelated software.

Sincerely,

David Lloyd

stopthepushers@1loyd.com

• United States

  Seattle, WA

  CORPORATE HEADQUARTERS

  RealNetworks, Inc.
  Street Address:2601 Elliott Avenue
  Seattle, WA 98121
  Mailing Address:PO Box 91123
  Seattle, WA 98111-9223

  Phone: 1-206-674-2700
  Fax: 1-206-674-2696
  Helix Sales: 1-800-444-8011

  Reston, VA

  RealNetworks, Inc.11600 Sunrise Valley Drive, Suite 200
  Reston, VA 20191

  Phone: 1-703-437-4422
  Fax: 1-703-437-6515

  New York, NY

  RealNetworks, Inc.462 7th Avenue, 3rd Floor
  New York, NY 10018

  Phone: 1-212-391-6668
  Fax: 1-212-391-9566

Traumatic Brain Injury. Why People Don't Understand Me | Traumatic Brain Injury Group

Traumatic Brain Injury. Why People Don't Understand Me | Traumatic Brain Injury Group:

"A person who believes that permanent brain damage must cause stupidity and bizarre behavior will not recognize the real brain injury in their spouse, child, friend, employee, student, patient, or self. And the research verifies that most survivors, once they are at least one year post injury, are not seen by other people as brain injured.

When symptoms like impulsive behavior or inattentiveness to the other person show up, the partner almost always gives the symptom a psychological interpretation–seeing the survivor as selfish or distant or uninterested or unmotivated, rather than brain damaged. This explains why so many love relationships, friendships, and jobs come to an end with the other person angry. It would make no sense to get mad at a person’s brain symptoms, but people get mad, and end relationships, when they see their partner as an incurable “slacker.”"

Click here to read more.

'via Blog this'

Thoughts about event memory and the nature of time

Thoughts about event memory and the nature of time

Having experienced a change in the character of personal memories, that have somehow been "flattened" since my brain injury, resembling a jumble of random facts with very little sequential "personal story" quality. I have been giving a lot of thought to what makes event-memory different than other kinds of memory as I look for ways to accommodate my new limitations so that I can function more normally. The process of writing down my thoughts about events as they happen has been the most useful tool I have found, but I still continually deal with mis-associated memories: facts and images that I failed to anchor to events by writing about them, tend to find a context in my pre-accident memories, which you can imagine, creates a lot of confusion from time to time.

I have concluded that the nature of event memory is inextricably connected to the nature of time.

Time is not just each person's personal trek through multiple temporal dimensions; it is also surfing the crest of an expanding wave of new possibilities. Every moment presents new possibilities that did not previously exist.

Each person's personal history is affected as much by the options that were not chosen, as by the options that were; but memories are also continuously re-evaluated by the realization of expanding options that were not chosen. "What if" is as important to reality as "what was," and personal reality is also shaped by the consensus of the beliefs of the community.

Therefore if we are to fully grasp the concept of Memory, we must allow for the expansion of options, as time itself continuously expands, because options not chosen, still affect our perception of reality.

Our universe expands in a branching fractal pattern. Evidence of this pattern is observed in the arrangement of planets around a star, of stars around their galactic center, and the distribution of galaxies, gas clouds, and empty space throughout the universe. The expansion of time (and gravity) is a part of that expansion.

If our memories are to truly represent time, they must include a similar branching of details, that may differ slightly from person to person, but which grow from a common shared experience, and from the choices we made, the choices we rejected, and the choices that never entered our minds....