Being in Charge of My Own Rehab

     Early on in the days after my accident, I found the tbi chatroom.  It was a sanctuary for me where I could communicate with other survivors.  I learned stuff about how to cope with my brain damage and how to get on with life.  One of the best things I learned there was that I have to be in charge of my own rehab.

     I got no official cognitive treatment for my brain injury.  I was in the chatroom one night bemoaning my fate when someone spoke up and told me this: You have to be in charge of your own rehab.

               You have to be in charge of your own rehab.

     This simple truism frightened me.  With trepidation, I slowly experimented with being in charge of my own rehab.  What did that mean for me?

     Being in charge of my own rehab meant that I had to find the people who were willing to steer me towards things I could do on my own to exercise my brain.  Someone in the chatroom recommended playing brain games on the computer designed for kids.  I did.  Someone else talked about an e-group on Yahoo for survivors.  I did that too-- until I got kicked out for refusing to change my email-- and that was how I re-learned how to write sentences that made sense to others.  A third suggested a specific puzzle game.  I went out and bought that. 

     I learned how to carry a notebook and a schedule, how to research information and evaluate it, how to replace my a-motivational problems with motor-vation.  I exercised.  I fought with my natural tendency to consume way too much sugar-- something I still wrestle with now-- and forced myself to rest when I was fatigued.  I learned that I needed to find a balance between rest and challenging myself to do something new or hard or strenuous.  I joined a couple of t.b.i. support groups.  I consented to the use of a cane for long walks and in the winter.  I fell.  I got up.  My balance improved and I fell less often.  I understood that the professionals who said, "No major improvement after the first year" or "We can't fix this" were well-intentioned but wrong.

     I am not the same person that I used to be before my accident.  I would have been better off in many ways had it never happened.  But it did happen.  I have to deal with reality rather than a world of make-believe.  My brain is not as effective as it used to be.  Aphasia to a writer is a special form of hell.  And yet, I continue to improve.  I keep striving.

     Ten years out and I am still working my brain.  I am still being in charge of my own rehab.  I hope that you are also in charge of your own rehab regardless of how much or how little t.b.i.-specific treatment you are getting or not getting and regardless of what the well-meaning helpers say about your limitations.

sapphoq healing t.b.i. says:  It takes courage to dream new dreams.   

  

Aphasia, I Haz It

     The second neuro-doc told me that I have mild expressive aphasia, or more specifically a phonemic paraphasia [N.B. which some professionals characterize as being entirely separate from expressive aphasia] with pragmatic and substitution errors.  I also have the associated right-sided weakness that a physical therapist recently pointed out as still being evident a decade after my head trauma.

     I am conscious of my speech errors.  I know when I've substituted a sound for another sound at the beginning of a word.  I figure that if the person that I am conversing with understands what I am endeavoring to convey, no correction of my pronunciation should be forthcoming.  A few other people appear not to agree.  Sometimes I've said to them, "Do you understand what I mean?"  After their response in the affirmative, I've told them to s.t.f.u. about it then.  I've become less defensive about this than I used to be.  Now I will repeat the correction out loud and visualize it cementing itself in my brain.

     I also get irritated when I cannot think of a specific word that I want to use in conversation.  That appears to be an anomia and anomia is central to almost all aphasias.  [Note to testers:  Many of your test subjects know that if you point to the thing on your wrist, the correct answer is "watch" and when you point to the writing implement, the correct answer is "pencil."  Just so you know that, I thought I would tell you that].  Fortunately, I am able to hunt through my brain for a similar word.  Although the substituted word is not exact to my intended nuances of meaning, I get my point across.  The vast majority of people that I interact with do not recognize this sort of thing when it happens unless I point it out to them.  I despise the blank that happens when my brain blocks a word from me however I do know that my ability to pick a different word is evidence that my cognitive slowing has speeded up a bit. 

     Another difficulty that I have appears not to be part of expressive aphasia or of paraphasia.  When people talk too fast-- and I think this chiefly happens when a store clerk or someone on the phone wants me to agree to something (like "buy this object" or "agree to this contract")-- I lose the gist of what they are saying.  I've learned to tell them to slow down.  If they don't, then I tell them that I have a brain injury and that if they want me to understand them, they must slow down.  A second failure to slow down results in my termination of the interaction, or less frequently a request to speak with someone else like a manager.  I've resorted to taking someone with me to a store or having someone listen in on an important telephone call if contracts are involved.  I describe the second person as "my disability advocate" because it then becomes more difficult for the other party to dismiss the presence of my helper-friend.

     Like all of the complications that I've had due to my traumatic brain injury, I continually work on improving those difficulties that I can identify.  Movement is especially important to me.  I substituted my [severely lacking] motivation with motor-vation.  Social interaction [including interaction with other folks on the web], adequate rest and nutrition, and challenging my brain on a daily basis has become a lifestyle.  I do not believe that the majority of improvement after a traumatic brain injury occurs during the first year.  I've had significant improvement throughout because I keep practicing everything.  That which cannot be fixed [and with a t.b.i., there are things that cannot be fixed] can be worked around.  My philosophy is not one of "attitude" or "surrounding myself with 'positive' people."  Action is the word that sums it all up, with periods of rest so that way I have the energy to take repeated action. 

sapphoq healing brain damage says:  I would have gladly settled for a less-challenging life.  I am not "better off" because of my brain damage.  Certainly, I am financially much worse off and my career (that I fought so hard to have) ended.  I have not found any evidence that a god "did it" or even "allowed it to happen."  I have found that it takes courage to dream new dreams and even more courage to take action on the stuff that I say I want.  Anyone can make a list for Santa Claus.  Very few people will want to even attempt to drive a sleigh hooked up to a bunch of grumpy overworked reindeer.


A few links:

http://www.aphasiahope.org/

http://www.aphasia.org/

http://preview.tinyurl.com/n8r6zc6    [Neuro-psych Central, a pdf on aphasia assessment tools].

Inhibiting Those Disinhibitions

Before the brain injury, yes I cursed.  I was fluent in cursing in more than one language.  I was good at it.

After the brain injury I still cursed.  I remembered curse words in several languages.  I was even better at it.

Cursing derives from a primitive part of the brain called the prefrontal cortex.  If the prefrontal cortex gets damaged, our inhibitions loosen and we may find that cursing [which is much more a motor and emotional activity than language is] comes easier to us than words.  During the weeks immediately following my brain injury, every other sentence contained at least one curse.  This was true during ordinary activities and not just when I was emotionally aroused.

I learned how to mitigate my cursing.  I discovered that endeavoring not to curse at all was easier than attempting to limit cursing to certain situations.  After a time, I was able to restrict my use of curse words.  Today, I curse very little.  The curses flow when I am very angry.  When I am angry, I monitor my use of curse words.  Sometimes I have to remove myself from the audience and go off somewhere on my own in order to calm down.  I do consciously decide to curse occasionally to add emphasis to something I am talking about.

Meaningful language derives from the Wernicke's Area of the brain.  The limbic system is not involved in everyday communication tasks.  Wernicke's is part of the cortex-- not the pre-frontal cortex-- and thus language and its' interpretation is considered to be a more advanced function than cursing is. 

There are other people on and off the web that can explain the mechanisms behind both cursing and the development of language than I can.  The point is that I had to choose to learn to modify my disinhibited behavior [cursing] in order to regain some control over my life post-injury. 

sapphoq healing brain damage says:  If I had to choose a disinhibition, I think cursing is milder than something like taking one's clothes off in public or setting small fires.