Wednesday, July 20, 2011

human guinea pig

I'm always up for an adventure so I've scheduled myself to screen for an ALS  clinical trial (NP-001),  currently in its second phase on July 29th.  I always wanted to sign up for a trial to cure diabetes but the opportunity never presented itself as I was always too healthy.  Now, being reasonably healthy and relatively early into this new diagnosis should serve to get me in.  The diabetes doesn't automatically shoot me out of the running.  We will see.  I already rejected entering into a trail in which my neurologist is one of the primary researchers because it included a hickman port and massive doses of  antibiotics which could possibly damage organs.  Thanks, already got a disease that wants to mess with the organs so I'm not going to do something to help that process.  Let's try another tree to climb.

In the meantime, I'm just trying to live my life. Although my progress is slow - i.e., I'm not in a wheelchair and I don't need a feeding tube or help breathing yet I am weaker by the day.  I still seem completely normal unless you see me trying to use my hands or get up out of a chair or use my arms to lift anything or you talk to me when I'm tired and I start slurring like a drunk.  All things considered I'm wonderful.  All things being relative.

This summer, I passed on sitting in Central Park to get free tickets for Shakespeare in the Park because I knew the energy expended would cost me three days down but my wonderful bridge buddies kept up the tradition and the beautiful Miranda (BFF) gave me her extra ticket.  JP thanked me too because it meant he didn't have to go.  Measure for Measure - what a confusing play by the old Bard and the actor's choices, especially Isabella, were hmmmmm.  questionable.  But what joy to sit in the middle of Central Park, in a beautiful outdoor theater, with a full moon rising!  The evening was beautiful.  just in time as now NYC sucks the life out of you with its heat and crushing humidity.  I love my air-conditioning and may not leave my apartment - BECAUSE  I don't have to.

My life these days is devoted to friends, eating and drinking really tasty meals (with friends), yoga, acupuncture, Structural Integration, occasional gyrotonics and feldencries work.  Oh the joy - and what a life (too bad for these strings attached to my lifestyle).  Why are there NO studies on the impact of devoted bodywork on ALS?  mystery.....


1 comment:

  1. Hey Saramy! My name is Judy Glenn! I am just writing you today to encourage you! My mom passed away from ALS in 2004. I am aware of the tough challenges you are going through! I just wanted you to know there are people out there who care! Judy