Monday, April 4, 2022

Being Like Bruce Willis

This is intended for those with a personal interest in me. The link is a good intro to aphasia in general. 

I don't have his looks or wealth, but unfortunately due to a brain infection  three years ago in early May, I do have aphasia in common with Bruce. So far, mine doesn't seem to be degenerative, but might be. 

 The evidence is that the damage from my brain infection/surgery causing seizures/aphasia are irreversible,  but hopefully not progressive. From my study/experience so far, each seizure is a “crapshoot". The wires got crossed by the initial damage, the ongoing seizures have a largely undefined effect as to how the brain attempts to compensate for the old damage AGAIN. The subsequent seizures  don’t seem to have any effect on the actual physical “wetware”, but there seems to be “software” running on that wetware … they obviously screw up that software right away, which is why the immediate effects are bad … like not remembering your name. “The dice” are rolled, during software “reboot” and so far it comes up with similar to the existing symptoms. 

I'm on lots of drugs to prevent the seizures ... last time, I went a year and 2 weeks before having another, so we added a drug and hope to break that record. Seven months and counting this time. 

Two weeks ago, while ending a spontaneous table prayer, I "brain locked" on "in Jesus name, amen." It was in my head, I just could not say it. It seems that the key ongoing symptoms are that inability to vocalize, or execute well known actions. A month ago, I mistakenly thought I needed to press two buttons on my ice auger to drill. I KNOW that right button is drill, and both buttons are reverse, but once I got the wrong idea, it was locked in ... I thought the auger was stuck in reverse, and had an embarrassing trip to the dealer.

I've had similar incidents since my first surgery, I imagine these will continue. 

At this point I have "incidents", but so far they are transient, and fairly infrequent.  Reading is still fine, typing is impaired, though not seriously so far. They don't seem to be getting more frequent, although that isn't that exact either. With each seizure there is some discernible loss.

The linked contains this possibly hopeful statement:

It isn"t only strokes that can cause aphasia. The disorder can come on gradually because of a brain tumor or a degenerative condition. It can also occur in temporary episodes brought on by seizures or, as I have reason to know, by severe migraine headaches.

So are my incidents due to the brain damage from the infection/surgery, or are they just "normal seizures" due the trauma of the infection/surgery? Probably a combination ... the HOPE was that I would have no lasting effects from the infection/surgery, but it wasn't a complete surprise that seizures resulted. The next assumption was that they would be "easily treatable" ... so far they have roughly been averaging every 6-8 months, but the last interval gives hope that we are zeroing in on the massive amount of meds to suppress them (near max dose of Keppra, plus Klonopin and Lamotrigine)

I totally echo this quote from the linked; 

The very worst attacks, the ones I have always found especially alarming, also cause transient aphasia. I suddenly find that I cannot summon basic words. I am unable to understand the meaning of anything I try to read and struggle to string together even the simplest sentences. Fortunately, these episodes of aphasia usually retreat within two or three hours, but they are intensely disquieting while they last. In the back of my mind there is always the panicky thought: What if this time the symptoms don"t subside?

My episodes of this scary set of symptoms are usually more like 24-48  hours after a seizure ... improving as the hours go by. "What if" is a common and generally unhelpful thought.

Since two of my primary enjoyments in life are reading and writing, the potential this is degenerative is scary. At this point, I have, and to the degree that anyone "understands" the gifts of the Holy Spirit ... the blessings of Holy Preaching, Communion and Christian Fellowship which I can understand and appreciate. Eternally they are more than sufficient ... life is but a vapor. 

When I was at the point of not knowing my name the first time, my Pastor offered me Communion. I started crying and stumbled through saying something like, " I know I need to believe something to take Communion, but I'm too mixed up to know what it is, maybe I shouldn't" ... or at least I think that is what I said. The Pastor said, "It is Jesus, not you that matters  ... it is a gift, it isn't about your condition, it is about him, and he knows your heart".

That was an extreme comfort to me. 

When I'm not having an "incident" (or of course a seizure) I seem "normal" ...  not able to remember names of people, books, etc ... but not so badly it seems "abbynormal (Young Frankenstein). My sentence structure may seem a little bit "off" at times, I may mix some words up, but so far nothing alarming. 

Enough rambling, even for those who care. I've had more than a blessed life -- "whatever will be will be".  

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