Life with TBI: Living in the present

There is nothing more frustrating than resetting my computer because something is not working, only to have no clue why I needed to reset the computer by the time it has finished its recycle.

At about 9:00...

At about 9:00...:

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At about 9:00 Sunday morning, Dylan Miller knocked on our door and asked to speak with Betty and I. He was looking very serious. I invited him to come in, and I led him to the living room, and I asked Betty to join us. When we were all seated, Dylan asked our permission to propose to Laura. I said, "absolutely." I told him to make her happy. I told him that means to spend time with her every day, even when it is difficult. Since then, I've thought of all kinds of "wise" things I might have said, but I trust I said the right things. Dylan showed Betty and I the engagement ring he intended to give to Laura. Early that afternoon he proposed to Laura, and she accepted. Laura asked me not to tell anyone until she had a chance to talk with a few key people first. So now the cat is out of the box. (I know that's not the phrase, but all of my geek friends will understand the poetic significance of boxes, cats, and quantum states.)

MORE car insurance can mean LESS money for the injured after subrogation?!

I created the following narrative for a lawyer I asked to review my financial situation. This material is a mashup of clipped comments I have made online describing various aspects of my financial situation after a car hit me, and caused a brain injury. I am not capable of putting comments like these together all at once, but I am able to combine clippings from previous writing into an intelligible narrative. All comments on this narrative can be supported with external documentation.


After maintaining an A+ average throughout a rigorous master's degree program, a car hit me while I was out bicycling for exercise, trying to be in my best physical shape to match my intellectual accomplishments. After the accident, I flunked the last class of the program, twice. Since I flunked, I lost my Federal loan money that paid for the class. Now I cannot access my records at all, until I pay for both times I flunked, plus once again if I ever recover enough to retake the class.


So now, unable to work, and without the degree, or even documentation of the work, I am being asked to repay the school loan. I have been turned down for disability three times now. I get letters that say there must be SOMETHING I can do. Sure, I can do some things, but not consistently. Work requires more than the ability to do a job. It also takes being somewhat predictable as to when I can work, and for how long at a time. I have periods of time, never more than two hours, when I can work, but then I "crash," and sleep the rest of the day. Some weeks I have no productive time at all, and just exist in a fog trying to recall what I was trying to recall. Other days, like today, I can think clearly for a while, but as I said, never more than a couple of hours at a time. That level of ability does not accomplish supporting a family of five. It may not even support me alone. It certainly won't support repaying thousands of dollars in school loans.


I have researched other people who have overcome similar difficulty. On average, it takes ten years for a person with my degree of difficulty to become self-supporting. By that time, I would have reached retirement age. Due to my wife’s disability, and being rejected for disability benefits in 1998, when she had worked recently enough to have qualified, our family not only endured the hardship of having only one income, but we did it while having to endure huge medical debts with inadequate group health insurance that excluded her health condition, AND we endured greatly increased non-medical living expenses that her disability caused us to incur.


I had expected my late fifties and early sixties to be the period of time when I would be able to recover from that long-term financial hardship, and focus on saving for retirement, after having sent my kids to college. Instead, my children are supporting me, and their own lives are on hold. In five generations, they will be the first in our family NOT to have college degrees, due to this financial hardship that was caused by a person who subsequently went to jail for six months, for driving under the influence of marijuana.


After failing refusing to pay for neuropsychological testing that could have resulted in early steroidal treatment that could have limited the death of many irreplaceable neurons, my car insurance is offering me a $25,000 settlement, after first taking out $19,000 that they paid for the health care they DID choose to pay for. Many of those expenses they DID cover might never have been necessary had they paid for the initial neuropsychological testing they refused to cover. There is STILL adequate coverage remaining under the policy to have paid for that neuropsychological testing, which is STILL necessary, but I won’t be able to have it done until I settle with the car insurance, so that I can tell my health insurance that there is no remaining car insurance to pay for the testing.


I paid EXTRA for $25,000 medical coverage so I would not be in this kind of predicament. Had I NOT chosen to buy extra coverage, my coverage would have run out sooner, The testing that needed to be done could have been paid for by my health insurance, I could have avoided needing all the additional testing that had to be charged to my insurance, and there would not have been such a large amount of money taken out of liability coverage, which was inadequate from the beginning, to cover all of my losses.

TBI Topics

As many of you know, I have been collecting articles I consider of value to those who (like myself) are learning how to live profitably with a new set of limitations caused by TBI.


I'm tempted to refer to these life changes as a new set of strengths AND limitations, although the "strengths" consist of a new emphasis on existing capabilities.

Just as a blind person learns to make better use of other senses, so a brain-injured person can make use of previously neglected skills, which may seem like "new" strengths. Part of living with TBI is discovering what those new strengths might be.

My prototype website, consisting of an unstructured collection of articles can be viewed at http://bit.ly/resourcesfortbi. As I consider how to structure the website to be useful to people with brain injuries and those who care for them, I have been thinking about topics that best summarize these categories of useful articles. Keep in mind that simplicity and some degree of redundancy will be necessary to make the site useful to the widest audience of potential users. I would appreciate topic suggestions, as well as your interpretation of these topics when you read them, and possibly improvements to topic names, and even suggestions about the general format and title of the website. Should it include skills training? Should it include an area for collaborative projects? What kind of discussions should be hosted? Should discussions be public or private?

Please comment. I depend on my social "neural network" as a means to accommodate my new limitations.

Exploring possibilities with TBI
Recognizing limitations with TBI
Living frugally with TBI
Legal concerns with TBI
Medical understanding of TBI
Laughter is good
Understanding how it feels to have TBI
Discrimination
Legal protections for those with TBI
Confidence and TBI
Understanding SSA and SSI
Accommodation strategies
Practical suggestions
Scholarly articles
Literature Review and Bibliography

What Is Your Learning Style? | Edutopia

What Is Your Learning Style? | Edutopia:

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Mostly my web research is related to brain injury, but information about learning styles presents an intersection between my interest in brain function and my interest in instructional design. I found this quiz interesting from both perspectives.

What Is Your Learning Style?

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This quiz asks 24 questions and will take less than five minutes to complete. Try not to think too hard -- just go with your first thought when describing your daily activities and interests. By the end, you may have some new insights into your learning preferences.

Editor's Note: While the idea that students have fixed, specific learning styles is not supported by scientific research, providing students with multiple ways to learn content has been shown to improve student learning (Hattie, 2011).

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How much time do you spend:

	NONE	ONLY A LITTLE	A FAIR AMOUNT	A LOT	ALL THE TIME
Getting lost in a good book.
Doing crafts or arts projects.
Trying to solve mysteries, riddles, or crossword puzzles.
Writing a journal or blogging.
Reflecting on your life and your future.
Playing sports.
Yearning to spend time with nature.

Understanding Post Concussion Syndrome, the inside view - YouTube

Understanding Post Concussion Syndrome, the inside view - YouTube:

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I stumbled across an excellent video describing some of the symptoms I experience. I liked the video because the vlogger is very articulate in describing her experience, and because her experiences are similar to mine. I posted the following comment about her video:

What an excellent video! I especially related to your comments about planning for pre-activity rest and post-activity rest. I also use guided meditation recordings. They seem to allow faster recovery. Otherwise I sleep the rest of the day after accomplishing one thing. 

With one notable exception, your experience and the way you are adapting are very similar to my experience. I don't normally experience headaches. Instead, I experience whole-body pain that is clearly linked to mental fatigue.

While this person mentioned daily journaling to cover for memory loss, one of my biggest "complaints" with my own condition is the amount of time it takes to maintain meticulous notes in order to cover for lack of event memory. It takes nearly all of my available time just to ensure I have a means to accurately recall the few things I was able to do. However, every time I fail to record my activities, I end up spending even MORE time trying to retrace my steps and reconstruct what I did. The only thing worse than amnesia, is the false memories that the brain creates to make up for gaps. False memories are devastating. They undermine trust in relationships. They cause needless arguments, often hurting those who are closest. When you can't depend on remembering, you have to depend on journal notes, because the alternative is to be the victim of your own imagination. The brain rarely allows gaps in event memory. If you can't recall something, you WILL make something up, and believe what you made up is true. So, as time-consuming as it may be, journaling is absolutely necessary for people with brain injuries.

National Organization of Social Security Claimant's Representatives (NOSSCR)

Evernote Web: NOSSCR

About

Whether you are claiming benefits or providing representation, NOSSCR offers you services, information and support. www.nosscr.org

Mission

Established in 1979, the National Organization of Social Security Claimants' Representatives is an association of over 4,000 attorneys and other advocates who represent Social Security and Supplemental Security Income claimants. Our members are committed to providing high quality representation for claimants, to maintaining a system of full and fair adjudication for every claimant, and to advocating for beneficial change in the disability determination and adjudication process.

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Brain Injury (TBI) Resources: Chess

Brain Injury (TBI) Resources: Chess

Everything pictured above and below happened because I mentioned to a friend (Dan Clough) that my neurologist recommends I play chess regularly as therapy for my brain injury. Thank you, Dan! (These photos were taken with my cell phone at Martin's Supermarket Coffee Shop, I THINK on Palm Sunday.)