"You Are Not Alone" : a message from the Brain Injury Association of Ame...

Finding vocational resource services for brain-injured people

This is part of a letter I wrote to an out-of-state vocational resources service. I have been looking for resources in Indiana for the last 29 months, with no success.

...I have found these Indiana sites, and have called and spoken with the head of [an]Indiana Vocational Resources organization, and have not found any programs for brain-injured people.

http://www.adaindiana.org/
http://www.in.gov/fssa/ddrs/2636.htm
http://www.biai.org/
http://www.topindianapolislawyers.com/.../

My own difficulties are a nearly total lack of episodic memory, but with increased ability to recall facts that helps compensate. Journalling has proven to be the most useful way to adapt to lack of episodic memory (which my neuropsychologist calls "sequencing"). I am also plagued by mental fatigue that builds rapidly any time I do any kind of mental "work," that I can feel depleting my mental energy reserve. As I work. I can feel parts of my brain shutting down. Mastery of numbers seems to go first. If I continue, I eventually get slurred speech, and get caught in time-consuming "loops" of repeating steps up to a point that requires me to look something up....then suddenly I feel confused, and start the same task over. These loops can steal hours of my day without my awareness of passage of time. Usually it takes having someone else interrupt me to make me conscious of what I'm doing. I rarely let the confusion get that bad. When I feel the first symptoms coming on, I take a caffeine pill to extend my workable time a little, and I bring my work to a close, with notes to myself about how to continue. Then I go take a nap. My productive cycles average 2 hours, but may take half and hour, or four hours. The nap time required to refresh myself can take as little as ten minutes, but usually takes two to four hours.

If you can help me find Indiana resources that can help, they would be greatly appreciated.

Compensating for lost abilities

A friend commented that her hearing loss in one ear (due to a head injury) is becoming less apparent to her. Her brain takes what she hears from one ear, and gives the illusion of hearing from both ears. I responded:

I'm sure that's possible. People who suffer blindness often talk about enhanced hearing and an enhanced sense of texture. 

I lost much of my episodic memory, but I believe my memory for facts is better than it ever was (probably a compensatory change). Combined with my notes and automated evidence collection with various applications from my phone and computer dumping information into Evernote, which I daily tag and organize, I have a sense of what has happened each day that often comes close to episodic memory. (But make no mistake, natural episodic memory has a sequential quality that constructed episodic memory does not have. It's sort of like the difference between seeing a person or seeing a black and white photo of them.) 

My difficulties with tracking time have also caused my philosophy to change. I think in terms of "now," and both the past and the future have the feel of something I read in a book. Only "now" seems real. I also think in terms of "seasons" instead of activities: such as deciding today is a time for doing laundry. I may not get much laundry done, but thinking that way enables me to ensure routine tasks get done, whereas schedules tend to get forgotten, because my brain doesn't work that way now.

The one area that still "sneaks up" on me are tasks I start, only to discover I already did them. But even that annoyance has become so common that I shrug it off rather quickly now, when it happens, so in a sense, I'm beginning to feel "normal" in spite what is obviously still not working. I still hope that in a few years I will recover enough to not need disability, but I'm still fighting to get it. I will probably know whether I am considered "disabled" by the end of next month.

Regardless, the bottom line is, that unless there is work that can be done on a flexible schedule, 2 hours at a time, and no more than 6 hours a day (including travel time) there probably is no kind of work that I can do

Brain Injury Attorney? The Important Difference for Outcome

I have no personal knowledge of this attorney, but the comments in this advertisement are worth while reading:

Brain Injury Attorney? The Important Difference for Outcome

What To Look For in Hiring a Brain Injury Attorney 

By Gordon S. Johnson, Jr. , Esq.
Call me at 800-992-9447
Consider a brain injury attorney if you are searching for legal assistance after you or a loved one has suffered a brain injury or coma.  The process of choosing an attorney at such time  can seem very complicated.  It may feel simpler to go with someone the family knows or with someone famous who you see on TV.

Yet, hiring the wrong lawyer in these desperate hours can have devastating impacts now and for you or your loved one’s future.

You realize that an attorney’s education, their experience, their knowledge, and their trustworthiness are characteristics you need to explore. In addition to those characteristics, we suggest that you choose a brain injury attorney because such a lawyer not only understands brain injury, but also has the time and dedication needed to work on your case. Lawyers who specialize to the level of being a brain injury attorney, are only working on big cases and thus have the time to treat your case like it is the big case that it is.
Brain injury cases take a long time to resolve.  You will be in contact with your lawyer’s office many times.  If you hire a brain injury attorney, your lawyers will understand not just the legal issues in your case, but the issues of a brain injury.

Make sure that the attorney’s paralegal or legal assistant is understanding and takes the time to listen to your concerns.  Speak to them.
Do they make you feel comfortable?  Do they speak respectfully and at a comfortable pace for you?  Do they make you feel they will be available for you to ask questions? 

How easy is it to reach them by phone?  Do you need to leave endless messages or do they call you back quickly?  How long will it take for you to speak with your attorney when you call?  Does the attorney have the time to give your case adequate time and resources?

At the Brain Injury Law Group, S.C., we have one brain injury attorney: Me. We take individualized time with each client.  We limit the number of cases we take on so that we are able to serve each client with the time and attention they deserve.

Nothing is more important in your case than the paralegal who is your constant contact person. Jayne Zabrowski knows brain injury and cares.

When you call our office, you will speak directly to Jayne Zabrowski.  Jayne will always treat you with kindness and respect.  She will pay close attention to the details and ask you many questions.  You will understand not only how much she knows about brain injury, but you will first realize how much she cares.  We treat our office staff with respect and provide them with education and knowledge, so they in turn are able to provide you with exceptional service.

This sentiment was expressed by a client in a letter to our office:

“ Jayne genuinely and skillfully expresses kindness, patience, respect, and empathy.  Through her sensitivity and understand, she has provided me with a listening ear, words of encouragement and often times emails of inspirational stories.   On many occasions, it has been Jayne’s caring nature that has given me the strength to continue on during very difficult times.”

Jayne just is different.  It will only take one phone call to know that.  She has dedicated herself to learning about brain injury as much as I have. What’s more, she listens and believes you when you tell her about your life now.
You are not “just a case” in our office.  We treat each case individually and give you our full dedication.

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Attorney Gordon Johnson 
Past Chair Traumatic Brain Injury Litigation Group, American Association of Justice
g@gordonjohnson.com :: 800-992-9447

---

Lies, Logs, and Audio Recordings

I'm not going to be so petty as to name names, but a local business attempted to inform me of an appointment they had changed. When I called to confirm the original time of the appointment, I was told it would not work. Then they said they had called me and changed the appointment. I don't know if they are attempting to take advantage of my memory difficulties or not, but because of my memory difficulties, I have a recording of the their false claim, AND a complete log of every incoming and outgoing phone call between my number and theirs. I am annoyed when people lie to me. I know it happens often. I know I have been guilty of saying things that were not true, usually either exaggerations or just false memories created by my disability, but I try to be up-front and honest with people as much as I possibly can be. The one area I struggle with is when others have told me something in confidence, and I don't cover well when questioned. So I have plenty of empathy for why a person might say something false, but when I'm already struggling all the time to work around amnesia, depending on tools such as phone logs, journal notes, and other artificial means to keep in sync with "reality," it disturbs me when I know someone has lied. That's all I'm going to say. I hope my message gets heard by the right people, and I hope I have not unduly hurt any feelings in the process.

Awareness

Taken just before my daughter's wedding. I missed the wedding.

I could not stay awake. I was rushed to the hospital shortly after

speaking the words, "...her mother and I do," as I gave my daughter

away. At least I'll be able to see the video of her wedding.

I am convinced that one of the main keys to a better memory is vigilant "awareness" 24/7. That level of awareness is difficult to maintain. I created this post to record my experiences after a phone call from my Neuropsychologist, who had to cut short his testing session the other day because his session is designed to take four hours, but my mental focus "window" is only about two hours between naps. 

At my test, I started out performing better that most healthy people, but quickly crashed until the doctor said it was pointless to continue. 

That happened at about the half-way point of the four-hour test. I was beginning to have difficulty speaking, I had switched from solving equations mathematically, to solving them using visual proportions, which meant my answers were in the ball park, but were no longer precise. I made the switch, because I could feel that part of my brain shutting down. By the time he called off the rest of the testing session, I had to take a nap before Audra and I could head home. 

Now he wants to start the test over, asking me to once again allow four hours for the test. He scheduled the test earlier in the day, which means I have to make arrangements to ensure Jonathan knows he must walk to work that day, or get a ride. Audra will need to cancel any plans she has to come with me, because I cannot drive out of town alone. 

Then I noticed the new appointment was scheduled one day AFTER my Social Security Disability hearing. One of the reasons I needed this testing was to provide evidence for that hearing. So, having been reminded of the disability hearing, I looked at my calendar entry for the hearing, realized it is in Central time, while I live in the Eastern time zone. The Lawyer wants to meet with me an hour before the hearing. I was pretty sure that meant everything would be an hour later by my watch than my appointment with the lawyer and the court time, especially since the Lawyer commented our meeting would be about an hour before the court appointment. (This is an all-day hearing in which many cases will be heard. What are the chances I will even be conscious during my hearing?)

So.... I looked up the time zone information and verified I was correct that I would have an extra hour to get to the hearing. I tried to look up directions to the Court house to make sure my planning was allowing enough time. I have no recollection of the following events. The next thing I knew, I was seeing a message on my screen thanking me for choosing to install the "White Cloud" toolbar. (WHERE DID THAT COME FROM!!!?) I made sure my anti-malware was on-the-job. It prevented the program from writing to the registry, and prevented the program from creating an auto-start, but the toolbar had already appeared in Chrome. I immediately used Chrome's tools to disable the tool bar and delete it. Then I searched and found two programs with the name "White Smoke." Now I'm waiting for another program to search my registry for any references to the white smoke program folder....

...and I still haven't informed Audra that I just ruined at least two of her days next week, or told Jonathan he will need rides to work two days next week...

I sure hope I remember to do that. I'm getting very tired. 

Audra just scolded me for not feeding the cat today. He should be fed shortly after I get up. I answered, but it can't be that late. I'm not awake yet....

Oh yes. I still need to get those directions....

Creative Giving 101

This is a class made for me! I think about this topic all the time, because I believe giving is important to any successful life, yet so often it feels impossible. 

In the past it was medical debt that made things impossible. 

Then it was the intensity of being a full-time student, and trying to get enough exercise in that I would be as healthy physically as I was becoming mentally. 

Then THAT plan fell apart (for the time being) when a driver high on marijuana decided the BEST way to cross an intersection where he had a stop sign and I had the right-of-way, was to floor the gas so he could be through the intersection before I got there. I still have mixed feelings about that kid. I'm alive because he chose to stay with me and call for an ambulance, and he paid dearly for making that choice: he was caught driving while intoxicated, and spent six months in jail because of it. When the prosecutor asked what I wanted. I said, "use your best judgement. He disabled me, because he broke the law, and I will be affected for life by what he did; but you caught him, because he was responsible enough to stick around until I got help, and I'm probably alive because he made that sacrifice. I won't press for any more punishment than you think is appropriate." (I actually felt six months was harsh, but knowing my own judgment was compromised by what he did to me, I did not consider myself to be in a position to say what I thought.)

Now, as I continue to fight to get disability compensation, and at the same time, fight to find ways not to need it, I honestly don't know how I can give right now.

I don't have any money that I can truly call my own. Whatever I would give, was given to me. I have no income, and no possibility of earning an income any time soon.

On the other hand, my ability to earn an income is limited only by the unpredictable nature of my current state. I have many moments when I am more capable than many people, but those moments are followed by mental exhaustion that is so extreme that I am a danger to myself if I don't get rest immediately, and while those naps can happen in less than a half hour sometimes, they often monopolize the rest of the day. In addition, I make mistakes I did not used to make. So even when I exhaust myself mentally, I still have to double-check everything, or the effort will have been meaningless. I have ALMOST no event memory. I cannot be sure of remembering anything unless I write it down, and follow through with making sure that what I have written down has been indexed in such a way that I will be able to find it again. Then I have to write a little bit about every moment of every day, or by the next day, I will have no clue what I did the previous day. Worse, I fail to keep those notes consistently. I'd say at best I create half the notes I should (due to mental fatigue), and then try to recreate the other half after the fact, based on receipts and Facebook notes I have written. That is how I construct my memories that enable me to function in a somewhat "normal" way from day to day.

So, given all that I am experiencing, how can I help others? How can I give?

Right now, I just hope that posts like this one are helpful and inspirational to others. I have big plans for the future, based on the assumption that I will eventually learn ways to compensate better for my deficiencies. I intend to contribute to a network of online resources for other survivors of brain injury. I have drawn so many mind-maps describing how to keep a well-documented library of quality research material, with citations in a database for easy retrieval. I also want to catalog the common false conceptions that cause people to waste time so I can help them avoid those dead ends, some of which ensnared me. I want to present that material in a way that a variety of people in a variety of circumstances can use it. I want to cater to brain-injured people who need pictures and videos. I want to cater to their families and caretakers. I want to summarize important studies in plain language that any adult can understand. I want to summarize the summaries at a kindergarten level. Then I want to take away all the words and just show pictures that illustrate the ideas, and I want to do it over and over with each article. I want to give other brain-injured people the opportunity to contribute to this effort also, because we all need to give as much as we need to receive. Otherwise, it would be like inhaling without ever exhaling. It is just as deadly to receive without giving (disabled or not).

Pray about these thoughts, as I pray about signing up for this class.

It is difficult for me to make commitments right now, because I know with each commitment I make, that I will break more of them than I keep. I'll feel bad about it when it happens, but it's a fact of life for me right now. How do I do this?

A Shot of Confidence Or A Freudian Swype?

(This post was originally on Facebook. I copied and pasted the post, and removed links to protect the privacy of others. I also fixed a typo. I'm posting it here mostly for entertainment, but it also illustrates some of what I do to accommodate my disability from day to day.)

I thought this was funny. I looked up this note specifically because I

could not remember the name of the drug that was injected into my right knee at the doctor's office. When I was at the doctor's office, I used Google Keep to write notes as things were going on. My Android Notepad uses a program called "swype" in place of a keyboard to enter text. With swype, you trace squiggly lines on an image of a keyboard, and the machine figures out what you meant, usually very accurately, but with enough mistakes that I get in trouble if I just post what I swype without proof-reading. This particular selection is a portion of the notes I swyped on my notepad while I was at the doctor's office a couple of weeks ago:

4:30 I was sent to get my knees x-rayed. I am to return to Dr Y's office when the x-rays are done. Be sure to mention Dr K's recommendation to have "goo" injected. 

5:00 BACK IN Dr Y's office.
He gave me a shot of confidence in my right knee. Apparently they don't do both knees at once.
An appointment summary report not available, but I can request one in a few days, if I remember. (Notice the subtitle of this book is "Injecting With Confidence")

I wonder if there is such a thing as a Freudian swype?
There is now. I just invented it!

17 hours ago · Edited · Like · 4

An informal email I sent today....

(I have significantly altered this letter from its original form, so that it hardly resembles the letter I cut and pasted here originally. I purposely removed specific details that would identify the recipient. After I published this letter, I noticed a few statements that were not true, not because they were intentionally false, but because the way I stated them implied things that were not true. I think I have corrected all errors now, but if I find more, I'll correct those also.)

Please forgive me for not remembering why I know you. 

I survived a brain injury caused when a car hit me while I was bicycling for exercise. I normally get about two hours of productive work between naps. I can usually limit naps to under an hour, but not always. I have some days when I never get beyond a state of semi-consciousness in which I have no recollection of my activities later, even though I may have talked with people and made commitments during those periods. I usually have periods of time each day when I appear awake, but I cannot account for the amount of time that has passed. On two occasions that I recall, time seemed to "jump" several seconds at a time. I think that may depend on where I am and what activity is going on around me. More often, I experience it as a television show ends moments after I started it. Often I will restart the show and find parts of the show familiar, even though I don't recall watching it. The most extreme cases like this that I recall, (again I can think of only two examples) I lost a couple of days, with no memory of what happened, apparently because I was never really awake.

I had one period from January 2012 to mid-March 2012 that I cannot recall at all, yet I have records of letters I wrote, and work lists I made. Most of what I wrote during that period sounds coherent, but some of what I wrote is meaningless to me now.

With these experiences happening all the time, I cannot in good faith ask someone to hire me. What kind of job can I do with these limitations?

I know in the past I confidently answered questions about you for LinkedIn, but in the last several queries I received, I just scratched my head feeling a bit confused, because a part of me says I know you, but I cannot recall how or where at the moment.

It is embarrassing to write this kind of note, but I've been doing it a lot lately. I was hit by a car while I was out bicycling for exercise two years ago. My memory for facts was not harmed, but I don't remember events, so much of my time now is spent journaling to make up for that loss.

The worst part about lost event memory is that the brain refuses to work without event memories, so it makes things up so it has a "place" where it can "hang" recently learned facts. As I said previously, my best defense against false memories are journal notes, and I have developed habits of collecting information that would seem pointless to most people, but those habits provide me with a way to quickly research those things I should be able to remember.

I have learned to identify false memories for the most part. There is often some incongruence between real memories and manufactured memories: details don't "feel right." If I pursue them I can find what's wrong, but usually I just review my notes, and discover what I know happened, and mentally mark the false memory as "questionable." (I seem to need those false memories of events to organize random ideas and images into something meaningful that I can grasp and associate with other thoughts and memories, but I don't have to believe the events my imagination has created in order to make use of what I learned.) False memories are disturbing, and destroy confidence. It is much more comfortable to keep running notes on mundane events, and later reconstruct those events from the collected evidence. Notes, phone conversation recordings, and scanned mail also help me built a time-line for myself. Otherwise, I tend to believe all of my false memories "happened" in the month just before my accident.

At least this tendency to assume so many of my memories all happened around the time of my accident gives me a hint that those "memories" might not be real. Sometimes I can prove these memories are false, but much of the time I just have to assume that if I think my memory is based around June of 2011, it's probably not a real memory, unless I can connect them with photos and notes I made at the time.

So, that was more than I meant to say about that! If I should know you, please help me recall.

Thank you,

David Lloyd

Choose hope

One of the reasons I choose to believe I am improving despite evidence to the contrary, is my belief that expectations influence outcomes. This is not a magical belief. I don't think "believing I'm healed" will heal me. However, I do believe God rewards those who put forth effort, accepting the risk that their efforts may be in vain, in order to pursue the best possible outcome.

Sometimes that reward comes in the direct form of improved capabilities or new ways to accommodate limitations. Sometimes that reward comes in they way others are encouraged to help us. Often the reward is hope itself: a positive outlook that inspires effort in ourselves and in others. When we inspire others, that inspiration has a way of returning to inspire us. And sometimes, here and there, I believe a few miracles actually do happen; although we wouldn't call them "miracles" if they happened very often!

I choose to believe I can improve, because I know that a life of hope is going to be more profitable for myself and for others than a life lived in despair. I have big dreams about how I can learn to live a useful life without the short-term memory most people take for granted. I use that hope to inspire myself every morning, to make reasonable plans, and to try to accomplish them. In that same spirit, I choose not to beat myself up over the days that I fail. I am not a quitter. If I fail tomorrow, I will begin the next day fresh, with hope of pressing forward, to make a profitable difference: if not for myself, then for someone else.

I encourage all of my readers to choose hope also.

This post was adapted from something I wrote earlier today, explaining why I constantly keep notes and receipts past the point when most people throw them away.

Because of memory problems, I record meetings and I request copies of notes from any professionals I work with, including lawyers, doctors, dentists, and anyone else I work with who takes notes during a meeting. I also take notes, but they often make little sense to me later unless I can associate them with other information I gathered.

Every piece of information I am able to collect, I transcribe recordings, and I scan and OCR text. So these pieces of information can be indexed and tagged for future searches. As I scan and OCR other people's notes, I often need to make corrections, so that I have basically rewritten their notes, but I also keep the original notes with them. I do that so the notes will be indexed in a way that I will be able to find in the future, when my memories have faded.

The input methods that have proven most useful are:

1. Automated phone recordings with indexed manual summary transcripts
2. Scanned and indexed receipts, instructions, and warranty materials (a daily task that with a fast scanner takes about 15 minutes a day)
3. Scanned hand-written notes that I made for myself during the course of a day
4. A backup plan for every commitment (every appointment goes in my hand-written calendar, and directly to Google Calendar via my phone or note pad if possible) I also ask for a contact card with the appointment time written on it. Then each night, I scan the card, Add it to my contacts database, make sure I have recorded the appointment correctly on Google Calendar, and then I link the contact card to the appointment record. I have automated reminders that will ensure any event on Google calendar will trigger a series of alarms on my phone, and I add other people to also receive those alarms if they will be affected by the appointment, such as when my absence will mean the car will not be available to someone else in the family, or in the case of long trips, to ensure I can have someone go with me. (I take my two-hour "active" window seriously. I don't want to get caught out-of-town in a confused state of mind with no one with me to ensure I make it home safely.)
5. I have a coach (trusted friend) who will keep asking me weekly about what I'm doing, what are my priorities, and who makes sure I'm not ignoring any commitments
6. A planning session each morning that mostly involves a daily template plus an automated calendar, a paper "to do" list, a "cloud-based" "to do" list (so I can enter things from my phone)
7. Taking regular naps before I get confused
8. A review session to add "tags" to my notes (make sure that words I might use to locate a note either exist in the note as text, or add them to a "keywords" list for each note)
9. A reflection session each evening to review my notes and create a short narrative of how my day went. I also use that time to write the current week's appointments and commitments to a white-board calendar I keep on the kitchen refrigerator in case I fail to keep other family members informed of my schedule and commitments.

If only the process of managing daily records didn't take so long, I could be functioning on a much more normal level. One thing I intend to work on next is finding ways to simplify steps for data gathering: especially learning to use voice commands for the computer and to dictate notes.

Even the most disorganized mind can follow a "to do" list if it is right there, with items to check off as they are completed.

I'm close to the point where I think I could accommodate lack of event-memory if I could find a way to automatically create a set of connections to make up for facts and events that my mind fails to connect because of event-memory difficulties. I picture the ultimate solution as an indexing system that resembles a mind-map, that could encode the natural mental connections we all make between events.

If I ever get this system down, I may write a book about the process. I think it would be of interest to more than just people with brain injuries or other memory difficulties. I'm not ready for that yet. Right now, I'm making the system up as I go, and occasionally finding a short-cut here and there, learning which steps are less useful, and which ones prove to be most valuable.

Comments about an informative You-Tube video about concussion: Concussions 101, a Primer for Kids and Parents

Jennifer Stokley commented on Facebook:

Save Our Kids! Please share with friends, family, everyone! Could be the difference between being Great, and becoming a Brain Injury Survivor!

Concussions 101, a Primer for Kids and Parents

www.youtube.com

Follow Dr. Mike for new videos! Uploaded on Dec 16, 2011http://twitter.com/docmikeevans
I've put together a few great handpicked resources on concussions at http://www.myfavouritemedicine.com/20... Check it out.
The symptoms of a concussion can be tough for kids to recognize..
Dr. Mike Evans is founder of the Health Design Lab at the Li Ka Shing Knowledge Institute, an Associate Professor of Family Medicine and Public Health at the University of Toronto, and a staff physician at St. Michael's Hospital.
http://twitter.com/docmikeevanshttp://www.facebook.com/docmikeevans
Conceived, written, and presented by Dr. Mike Evans
Illustrated by Liisa Sorsa
Produced, directed, and filmed by Nick De Pencier
Picture and sound edit by David Schmidt
Gaffer, Martin Wojtunik
Whiteboard construction by James Vanderkleyn
Production assistant, Chris Niesing
©2011 Michael Evans and Mercury Films Inc.
Category
EducationLicense
Standard YouTube License

Like · · Unfollow Post · Share · about an hour ago

• David Lloyd I think this may be the best, most comprehensive short video about concussion that I have yet seen. I still wish a couple of points had been made that were not made.
  
  
  1) Rotational injury, caused when a person is moving in one direction collides with an object moving in a different direction does more than just hit several parts of the brain, because different parts of the brain have different densities. You can spin a hard-boiled egg on a table, and it spins easily, because the relative density of every part of the inside of the egg is about the same. A raw egg, however, resists spinning, because different parts of the egg have different densities. Spin a raw egg, and it will never hatch. Drop it, and as long as the shell doesn't crack, it still has a chance of hatching if it is incubated. Various unintrusive methods of looking inside the two eggs may give the impression than both eggs are fine, but on scale too small to see with modern scanning technology, the egg that was spun has torn structures distributed throughout the egg, and is far more seriously damaged than an egg that was hit from one simple vector.
  
  2) For this reason, that rotational injury is so much more serious than a simple "bump" from one direction, the circumstances of an accident, with vector analysis of the two or more objects that collided can be a strong predictor of how serious an apparently "mild" injury may be.
  
  3) To my knowledge, NO ONE is designing and testing sports or bicycle helmets with dual-vector analysis. (Such as dropping a test subject onto a fast conveyor belt.) Consequently, current safety ratings of helmets are rather useless in terms of predicting a helmets ability to protect from rotational injury. It would be relatively simple to design a helmet insert that would provide rotation protection. Just create a tight-fitting inner helmet that attaches to the outer helmet with hard rubber studs that resist motion, but can stretch to twice their length before breaking. That slight change in helmet design would significantly reduce the number of serious sports injuries at negligible additional cost.

What it is like to have short-term memory problems.

I think I've accomplished a lot of things today. I just don't recall doing them. As I sit here typing, I realize I'm late to go shopping with my daughter to get a tie for her upcoming wedding. The time is 3:00 pm, but I feel as if I just got up and am still planning what I'm going to do today. According to notes I have already written today, I have ordered parts to fix a leaky faucet, I have fixed my daughter's network connection to my printer so she can print. I have missed two appointments, written notes to the people I stood up, apologizing. I have rescheduled an appointment, I have cancelled another appointment that conflicted when I rescheduled. I have sat here feeling bad because I know in the past I would not have tolerated my own incompetence from others. I certainly would not have understood what has become a fact of existence for me now.

Living with faulty short-term memory is sort of like having Alzheimer's syndrome, except that I have hope the decline will eventually stop and I may get better some day. I'm sure there are plenty of other differences. I remember my life prior to my accident, and I "sort of" remember my life after my accident, if you allow for the way I have clipped together notes I wrote along the way, and studied my own "history" to fill in the gaps. One of my biggest struggles is the recognition that I "make stuff up" when I don't remember. It is very humbling to not be able to depend on my own memory.

I try to be productive, but it is hard to be productive when I literally on live "in the moment." I try to plan, but side-tracks to my planning happen all the time. Meanwhile I get more and more tired until I have to stop everything and take a nap, because experience has shown that trying to continue once tired results in increasingly dangerous confusion.

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