Category Archives: Spasticity

20180929 Day 1: Botox for extreme spasticity

#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender

This is a discussion about initial effects of taking Botox for extreme spasticity of the adductor muscles in my right and left legs. Please realize this is targeting to very specific muscles and it is not addressing the multitude of other rigid muscles I have throughout my entire body limbs and head.

The injections incurred along the adductor muscles on the inner thighs from my groin to each knee. There were twice as many injections on the left adductor as of the right due to the severity of the left adductor.

After one day of having the injections, I feel the need to reduce the oral baclofen which I have been taking. I have slept sleep for the last 24 hours and I feel drugged. I have attended a local social event. It was a craft show at the local Civic Center. I was not doing well upon arrival. The stringent activity required to get out of the car, and into my wheelchair, and into the building took its toll. After a while my wife pushing me in the wheelchair, I was able to recover some.

I was startled to see how many people I knew attended the event. I was especially happy to see one of my former coworkers, with which I shared an affinity for a coffee break. I continue to miss work with these wonderful people dearly.

I barely had enough energy to make the entire floor. I had to request that my wife get me out of there and dump me at the house. Where I am now, drinking a BCAA to fight off cramps.

I am having to write this article through voice recognition, as will be the method primarily used to compose articles going forward. The acuity of my hands to press the keys that I need them to has degraded to the point where voice recognition has now become a necessity and not something cool.

Upon leaving the event, I was reminded that the Botox was specific to only two muscles. The issues I have with the remaining muscles of my thighs do not make me happy. I am glad that greatest offenders have been silenced. However, there is one area on the left adductor, are nearer about, that remains quite painful. As does the remaining muscles in each thigh. The pain is not as dizzying as the two silenced muscles, but I will not be playing football anytime soon.

The muscles forward of my armpits continue to be an issue and are exacerbated by their use to compensate for the lack of my muscle ability in my lower half.

I have a marvelous wife that understands the anger I feel at my body for abandoning me. I hope that one day she will understand how much she truly means to me. As I truly can be difficult to live with. I just learned that my dictation software will not allow me to say a curse word.

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.