Two weeks ago we (wife, daughter and I) went to Tennessee to provide
whatever help/support that we were able. I have just returned, the wife and
daughter stayed on to help.
Chris was completely paraplegic when we arrived. He had learned how to self
cath, get in and out of a chair and other ADL type of things so had been
transferred to a rehab hospital (Health South) in Memphis.
He walked two steps his second day there and a couple of days later a
miracle occurred. As he was in the bathroom he was having problems pulling
his pants up and " I got so ticked off I just stood up without giving it any
thought." when he realized he was standing he thought "If I can stand I can
walk". He went to his PT Nurse and asked for a walker. When she asked why,
he told her he was going to walk. She got it and he walked over 85 feet!!!
That was great, but the next day he started having these terrible muscle
spasms that would start from his toes and goe up one side of his body and
down the next. He was in so much pain that he was in tears. The docs tried a
number of meds which did not help so they finally started giving him
flexoril to knock him out. After a couple of days Chris would not take the
flexoril any longer and the experiments began. He is now on a mixture of
three drugs ( I forgot what they are). One step forward and two back seems
to be the order of this thing.
But things have progressed. Chris has learned to control some of the spasms
and he is now using a walker..108 feet last night!!! Some times the pain
makes him want to stop but then his resolve to walk kicks in.
Before we went to TN someone on the list remarked how this TM is in some
ways harder on the family than the afflicted one. I could not see that
the..I understand it now. I am still trying to deal with the emotions. I was
kind of happy to come home so that I could DO SOMETHING USEFUL. I am a
person who is a doer, a networker. I am used to making things happen and I
am so frustrated at not being able to cure my son or take his pain away from
him. But at least here I can get more info on this terrible
disease/virus/condition or whatever and perhaps help in that way.
Thanks for allowing me to vent. I am not always so long winded. Thank you
all once more for the support.