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Listening to Gabrielle Giffords speak today made me cry, and I'm sure I'm not the only one.  It also reminded me how horrible it is not to be able to speak coherently.  It's a nightmare to be trapped in your own head, but not be able to say the words that you're thinking.  You're reduced to the level of an animal - having to grunt and point, because by the time you remember the word that goes with the object you need, it'll be two days later.

I can relate. In 2006, I started having some strange symptoms that I couldn't pin down.  I had problems speaking.  Words would get confused between my brain and my tongue.  I would set out to say one word and end up saying another.  Sometimes while talking on the phone I would forget not only what I was about to say next, but what we were talking about, or even who I was talking to.  I also had problems with recognizing faces.

I started to go through the process of diagnosis in 2007.  More symptoms were cropping up.  Now I was having trouble coming up with the words I wanted.  I had a hard time stringing sentences together.  Even if I could come up with a sentence, I'd forget what I wanted to say halfway through.  When I managed to speak, it was slurred, and had no inflection.

Even typing was a struggle.  You'd think that at least I would be able to write down what I wanted to say.  But no - every time I typed a sentence, ti wulod ocme uto kile htis.  Our eye wood youse homonyms.  (It's funny how many homonyms there are!  I think I found all of them.)  So communicating even with written words became a real struggle.  

I was diagnosed with MS in 2007.  Here was the results of my 3T MRI, taken a year later:

There are a few scattered punctate areas of signal abnormality within the supratentorial white matter, located in a classic distribution for demyelinating disease.  The single most conspicuous focus is in the right frontal lobe in a classic periventricular distribution.  There is also some minor involvement of the corpus callosum.  There is an area of demyelination within the ventral aspect of the pons to the right of midline, and also a subtle lesion within the left side of the medulla.  There is also a minor demyelination within the right inferior portion of the middle cerebellar peduncle.
While I haven't been able to find any information on Gabrielle Giffords' exact injury, we do know that the bullet entered the back of her head at the cerebellum, and exited at the front, through the frontal lobe.  

The cerebellum helps us with our motor skills - it controls the muscles of the body, and allows us to walk and chew gum at the same time.  Damage to the cerebellum can result in ataxia (walking like you're drunk) and lack of control of the parts of your body connected to the affected area.  In Giffords' case, we know the left side of the cerebellum was affected, so part of her recovery process has included physical therapy to teach her brain how to access those muscles again.  It also appears that she's receiving speech therapy - to learn how to enunciate, and how to process language correctly.

There's nothing like having brain damage to point out how little we know about the brain.  The frontal lobe and its involvement in speech is well known.  What isn't well known is its effect on motivation, planning, social behavior, and other higher thought processes.   I know how much the lesion activity in my frontal lobe affected MY behavior.  I even managed to screw up Hamburger Helper.  I can't even begin to imagine the kinds of challenges that Gabrielle Giffords is facing.

But there's nothing more horrible than not being able to talk, or think clearly.  I spent three years - from 2007 until 2010 - in a fog.  The first year was very difficult.  I don't remember anything from that year, except that I had a really hard time communicating.  In 2008, I found I could put a sentence together with some hesitations.  If I used the wrong word, I wouldn't know it (except for the strange looks I would get.)  2009 was better in some ways, but I kept having a problem with 'moving on' from one subject to another.  Or I would hear and understand what somebody was saying, but for some reason I kept acting as if I hadn't heard it at all.  It wasn't until 2010 that I could really say that my thought processes were more 'normal.'  

I think right now I've recovered as much as I'm going to from my flare in 2007.  It's been five years.  I can speak a complete sentence, my typing is back to normal, and I can even make palak paneer without much trouble.  So my heart goes out to Gabrielle Giffords.  She has so much more damage to recover from than my little ol' lesions.  It may take her three years, or five, or even seven, before she feels 'normal' again.  But this time to recover is essential.  And I hope when she returns, she'll not only be able to talk up a storm, but kick some Arizona ass.


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7:03 PM PT: Wow, first diary I've ever had on the rec list.  Thanks!  

JoanMar mentioned Dr. Jill Bolte Taylor's book, A Stroke of Insight.  Dr. Bolte is a neuroanatomist who had a stroke.  She has a unique perspective on her condition (and her recovery.)  It looks good to me - on my Amazon list.

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Originally posted to Jensequitur on Mon Jan 23, 2012 at 01:56 PM PST.

Also republished by Personal Storytellers and KosAbility.

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