Category Archives: Recovery

201910106 – Update, kinda

What’s happening with me?

I want to make a claim that we have got the spasms under control.  They still occur, but differently.  In the past, the spasms would be grave and rip muscles in a lightning strike.  Now, the spasms occur more slowly.  My muscles start to pull. My “markers” are different.  I notice that if my cheek muscles get tight, I’d better be taking some additional meds and rest.

My spinal column seems to be getting affected. The constant tight muscles are causing narrowing, osteophytes, and a number of other issues with my skeleton as a whole.  My neurological system is taking a hit as nerves are being compressed.

My medical treatment is more of palliative care, and the injections I’m receiving are focused on deadening nerves or relaxing muscles in a target fashion.

My hands occasionally are capable of typing.  However, any static motion causes cramps and spasms.

To be able to do anything, my body must keep moving.

Suspending my head frequently causing painful issues with my neck.  I’m not sure where that is going.  The issue is relatively new and documented on my various medical images generated by MRI or X-Rays.  Likewise, for my lower back.

Fear, is becoming a hurdle.  As staying out of my comfort zone for an extended period of time will drop me and cause days of recuperation if I screw up, I am beginning to dread not being home. Not being next to where I can chill my body or get to my “safe zones” quickly, really is brewing fear. I must break these ideas and overcome them. My method of going out of my home includes taking copious amounts of medication.  Seeing the world stoned, drugged or whatever term you choose to use, is my only recourse of action to be able to escape Eden.

I must do it now. As, I submit this article, I’m going get ready to go to Mass.  My wife is serving on the Altar.  I don’t want to go without her being next to me, but I have to do this for myself. To overcome the fear of pain.

Wish me luck.

In Christ’s name,
Jay C. Theriot

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.