Truly Blessed

ALS patient James Martin shares his journey.

Progress update: Tired but still blessed

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James Martin
Thursday, 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.

James Martin is a former attorney and graduate of Gonzaga University and Marquette Law School. He lives in Spring Prairie near Burlington. He has been diagnosed with Amyotrophic lateral sclerosis, or ALS. He is married with 6 kids. James is a community blogger and is not a part of The Gazette staff. His opinion is not necessarily that of the Gazette staff or management.

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