My Speech

July 13, 2009 at 8:02 Leave a comment

My speech continues to worsen.  Most of the people that know me well are having trouble understanding what I am saying or part of what I saying.  My family, especially Debbie my wife can still understand me.  Therefore, you will be seeing me carrying a black box in my left hand.  It is a communication device that I will be using to communicate with people.  I have used it a couple of times in public but I am going to have to depend on it more and more.   It will be much slower than me talking so please be patient with me as I type a response to your questions or if I am in a discussion.   I am a talker and this will be a difficult transition for me.  So please be patient with me.

I carry a handkerchief around with me every where I go because of excess spit in my mouth due to swallowing problems.  I drool and this is the most embarrassing to me.  I am taking a new drug and it is helping me dry up most of the spit so I no longer drool that often now.    My lips are weak I can no longer hold back a mouth full of a liquid and if I do I will end up spitting it all over the table and you if your sitting across from me.  I use a straw now to drink most things.  If I don’t a straw I need to sip it and swallow it immediately.

My muscles continue to flex themselves when in bed or sitting still they trying to communicate to my spinal cord or my brain stem however they are not getting a return signal.  After some time those muscles will die.  This disease does not affect my eyes, my bowel movements or my urinary functions.

They do not know why one person gets disease over another one does not and they do not have a treatment that prolong will life.  I have the most progressive form of the disease.  Some people live with it for decades when it begins in their legs.

I cry more often than I have in the past.  My favorite hymn is I Will Glory in My Redeemer and I can no longer sing it I just weep.   There is another hymn that affects me the same way.  These to songs affect my heart most deeply and I am become overwhelmed by God’s love for me that I do not deserve and I overcome by his lavish Grace.

Pray that God will show me what he wants me to learn from this disease in my relationship with him.  Pray that I will never complain about this disease in speech, thought or in writing.

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