Category Archives: Coordination

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.

2017 December 5th, 2nd Trial of the Cocktail

Bottom line up front:  I think we may have gotten onto a cocktail that works.  If so, this means we have a valid treatment plan that addresses the massive spasmodic events.  After 11 months of turmoil, we have something that stops an incredibly severe event.

I had to leave the house this morning for some errands.  I had lunch with my wife at our favorite burger joint and then I dropped her at the office.  On the way out of the restaurant, I noticed my muscles signaled I was in trouble.  But, it was just spasms in my upper left thigh.  By the time I made it out of her parking lot, my abdominal muscles started to buckle.  Then the right side of my back to the right of L1 joined in.

By the time I made it home (total time from onset was about 15 minutes), my left leg, right shoulder, right lower-mid back area, abdominal wall, left forearm and left foot all were afflicted and I was at level 7/10 on our pain scale.

I responded with Zanaflex, Baclofen, Lortab, Horizant, my dog Salsa and Clint Eastwood. (I laid in the bed with Salsa with “The God, The Bad and The Ugly on.) It wasn’t long before I was out.

I was able to get about 1.5 hours of sleep (thanks to telemarketers).  The spasms have retreated.  I am lethargic and in a world of hurt from the residual injured muscles.  However, I caught a rapid and vicious attack in the making and stopped it before I had the massive all-over body spasm that pulls almost all my muscles.

Thank God I was wearing a panty-liner. It was filthy.

I can live with the pain I am in now.  I am counting the seconds until I can take more pain meds, but I stopped that major spasm.  The pain from those spasms are indescribable and extreme.  I can only give you the residual effects after I have one.  The pulled muscles, the long recovery time and the frustration of knowing I lost a battle again.

I think the tide is turning.  I hurt, but I’m happy and thankful to God for being with me always.

Thanks and God Bless,

Jay C. Theriot aka Twitch