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     The disease of loss.  It takes and takes from everyone it touches. There is very little that this disease gives besides heartbreak.

Among the losses we face individually , loss of function , independence and dignity to name a few.  There is the ultimate loss:  LIFE.  This has been on my mind quite often of late.  As in my last entry , my own physical status has me ruminating my own mortality.  Late last week brought the sad news of the loss of a fellow advocate and friend.  While death is a given in this brutal disease , some passings are unexpected.  I had just attended a Zoom meeting with Bryan the day before he was called home.  He was his usual self.  For comparison , he was in a much better place in disease progression than I.  When I woke on Friday , the first thing I heard was my wife telling me that he had died. 

      This was not the first time I have experienced a death like this in my ALS life. But it sure as hell doesn’t get any easier. I can’t imagine a more ruthless disease. One in which there is essentially no hope and every person you meet with it , will very likely be gone in short order. ALS is a true death sentence. 

     There are very few long term relationships within the ALS community. It is a hard club to be in. It does make the friendships we forge very special. In spite of our losses , we push forward. Never forgetting those whose shoulders we stand upon. 

     I dedicate this to B Wayne and all of the loved lost to ALS. Get the Good Stuff.