Thursday, June 3, 2010

"Speaking" the Truth....

I am afraid to speak the words. It's as if I avoid saying, "I'm losing my ability to verbalize my thoughts," then it won't be true. But it is.

For as long as I can remember I've been a bit talkative. Spoken language has been my friend, my shield, and my weapon. My verbal skills are the rocks I have built my career upon.

I was not always sure I would be able whip you in a fight but I was almost always sure I could convince you that fighting me was not a good idea.

Slowly, ever so slowly I am becoming aware of a slowing in my speech. As the tremble in my little finger has digressed to my inability to write, do does the tremble in my lips lead me to believe I will soon go silent.

The insidious nature of my malady is such that I never notice the day to day deterioration. Some days are better than others, but the day that was a bad day three months ago is now a good day.



  1. KEEP WRITING, KEEP TALKING, make those synapses work for their fish oil! I encourage you not to censor too much because who the heck cares about details such as spelling and grand vocabulary. I think (and this is totally selfish on a couple of levels) that continuing to "put it out there" is of great value - not just to your brain, but to the brains of those who read and hear and listen.
    Sometimes what we do is just continue, even when it's not in the direction we used to think we were headed.

  2. God, that sucks. I feel for you, my friend. I think that it would be a personal hell if I were to be trapped inside my own body, unable to communicate. I, like you, am a bit of a talker, so I especially understand your fears with this...

  3. I agree with Fay's Too completely. Write whatever comes to your mind, without a worry of spelling or grammar or anything else.. the whole point is to keep exercising that part of the brain as much as you can..

  4. Do you want to fight this?

    The disease has no consciousness. It is not a being or deity. You can not make it mad. It is like a machine. It will not punish you for trying to turn it off.

  5. I was diagnosed with CBGD 2 months ago after many months of testing and Doctors they come up with something I have never heard of. Tell me there is no treatment and in 5 years I'll b dead. Not the best of days! Funny thing though I just smiled and said please write that down for me so I can google it when I get home. Corticowhat:You need to know I am such a leaky faucet these days, I don't know if it is the disease process, or the fact that Im dying, but I didnt shed 1 drop.The info on the web was extremely negative and depressing I read it all then I cried! Then I got angry ( I have gone through all the phases of death and dying except acceptance)
    I just refuse to ,talk about denial.
    I have been searching the web to find someone with this disease to share with, I do so understand your thoughts on losing your verbal ability. That was something about myself I could always count on, now when I speak sometimes people look at me very oddly and I wonder what I just said.
    I am glad you are out there and have decided to share.

  6. Me, too.
    Very glad you are out there, putting it out there.

  7. Dear CW,
    I'm soooo sorry you're having to live thru this hell... or should I say DIE thru this hell?

    Maybe it's time to make a change in your "FRIEND", "SHIELD", "WEAPON", and "ROCK"!

    Fear is the beginning of wisdom...
    Psalm 111:10

  8. I know firsthand what your going through. I'm getting used to hearing people say "WHAT" also. I stumble around more and more every day. Some days I look like a weeble.
    Just know you are not struggling alone.
    Hang Tough


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