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:

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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:

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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:

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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.

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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.


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