Category Archives: Recovery

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.

Supporting Documentation for “The Method”

#KennedysDisease, #SBMA

If you have read Soft Claim of Victory; I think we have a method, then you know the real evil of what we are up against, and what our efforts are to fight it.

My wife and I had lunch together at  a local brewery.  I know the general manager there, and they have incredible food, so it was an easy decision to make.  The manager hadn’t seen me in a good while and I looked much better than last time he saw me… which begged the question, “What’s going on?  How are you doing?”

So, I explained to him about the BCAA and protein drinks.  He suggested I look into creatine drinks for rapid repair.  I did, the documentation for creatine is all about rapid recovery from a run.  Not damage to the muscle.  But, once I eliminated the “creatine” keyword from my search, I came up with this article:  8 Ways To Maximize Your Post-Workout Recovery written by Shannon Clark for Bodybuilding.

In it, they recommend a regimen including BCAA, protein and electrolyte drinks.  The order and consumption amounts differ from my plan.  But, I thought, how cool.  Her plan contains all the ingredients of my plan.

So….  Based on her article, I will do the following: 

  1. On onset – drink a BCAA, quickly, along with taking my Lortab and Zanaflex.
  2. Drink a second BCAA during the event.
  3. After the event, drink two protein drinks.  She suggests 50g of protein.  My drinks provide 25g per.
  4. Fifteen minutes after the protein is down, then 32 oz of electrolyte drinks.

I’m thinking… That’s a lot of liquid.  But, if it can stave off the effects of those blasted spasms, then, I’m game.  It is the first evidence I have come across that supports what we have discovered on our own.  I am emboldened by this finding.

We still don’t have a clue as to “how” to stop the spasms.  Frankly, I don’t think we every will.  They come on quickly (25 minutes from 0 to max), little warning (I feel a slight aura, but nothing I can  put my finger on) and strike deep (they have torn muscles in the process).  Unless I would have IV sedation that would drop me, I don’t have hope of anything being effective.

However, if we can diminish the ability of these events to wreak havoc on my body, my quality of life will soar.

That is where we want to be.

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.