Category Archives: Discovery

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.

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.