Hope Fulfilled, But the Fight Continues

#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender

Many glorious thanks are owed.  I remain in shock that we have come this far.  At this juncture, my words fail me.  I think we just closed a chapter.

Several nights and days have passed since my wife and I ceased work on developing the Abort! method.  We are now holding the method static and putting it to use. It continues to work.  However, there are caveats.

  1. The concoction only stops the spasms.  There are many other symptoms that rage on while the event is occurring (as I was so brutally reminded).
  2. I must notice when I am getting into trouble early.  The earlier I react with the BCAA the better chance I have at stopping the spasms.

I have had two long events.  The first, lasted about 13 hours on Saturday and the next lasted about 6 hours Monday night.  My muscles are sore, but no where near as destroyed as the have been.

Finding some way of stopping the spasms was only a battle in a long war.  However, it was a major battle.  I feel this was my Normandy.  We now have a foothold.  I remain in amazement.

As for how I am doing?  I’m walking.  I want to shout from the rooftops.  However, I feel despair.  I had a good friend have a massive cardiac arrest and has now left us.  The whole thing took 24 hours.

I have been fighting a critical stage of Kennedy’s Disease for 21 months and running.  It took my friend less than 24 hours to die. 

I am lost for words.  Instead of thoughts about our miraculous achievement, my wife is breaking down at a nail shop and I the mental picture I have is of his wife and two daughters, holding one another weeping.

I grieve for my loss, but even more for there’s.  The were a devoted loving family.  You could see it in their eyes when you asked them about their kids. I can’t imagine where they are.  I pray they find peace.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity. You will need an IRC Client such as HexChat to connect.