Janesville71.6°

Progress update: Tired but still blessed

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James Martin
December 5, 2013

My apologies, it has been awhile since I have posted an essay. My last post was regarding the experimental drug trial I participated in.  Short version, no benefit.  Longer version, the meds made me very tired. Since being off the meds, my energy has increased which is good, but physically I continue to decline.  

I am thankful that my progression is slower than anticipated.  In the words of Billy Chrystal, I look maavelous!!!, but I continue to to feel deterioration.   It is tiring to type, having to peck out each word letter by letter with  my stylus.  So instead of typing the word stylus, I have to think about the keyboard while mentally directing  my hand to move to each letter simply to type s-t-y-l-u-s. That makes it very slow and capital letters are especially a struggle.  e e cummings was a genius. To put it in perspective, this paragraph took more than ten minutes to type.

I remain mobile, but now generally use a walker except at home where a cane is sufficient. It is tiring to go out or walk any real distance.  I am still able to feed myself though I cannot cut my food.  Sleeping necessitates three pillows to allow easier breathing.  I do not use a bipap machine because it is like trying to sleep while scuba diving, and I never enjoyed shark week. 

The more I physically do the worse I feel, conversely the less I do the better I feel. They say the more time you spend together the more you grow to look like the other; it is true.  Each day I more closely resemble the living room furniture and my chair is now sporting a cheesy goatee.  Boy does that thing scratch.

All things considered, I remain truly blessed.



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