Category Archives: Fatigue

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 –> see: irc:// You will need an IRC Client such as HexChat to connect.

2017 December 30th – Shiatsu Nirvana – Final Day

When you have a neuro-muscular disorder, using a Shiatsu device to self-massage is as close to Nirvana as you can get.

Today, was not good on the medical scale, but through the use of modern chemistry, we were able to scavenge parts of the day.

I didn’t make it through breakfast.  When we were at the table ordering, I grabbed the menu and saw that it was trembling.  My super wife ordered breakfast for us.  We ate and returned to the B&B, where I took the cocktail.  She left to retrieve her son and she gave me about 2 or so hours to rest.  We went to lunch and had a marvelous burger.

The medication was working so we were able to make it to Melrose plantation where the late artist Clementine Hunter used to live and paint.  We then made it to the former location of Kate Chopin’s home.  The place burned in 2008, but there were still some out-buildings and interesting artifacts.  I would assume what we did was trespass, but we were able to get a good bit of photos of the remains.

We returned to the B&B where I took the cocktail again, a second time in one day, to alleviate the building pain and hopefully stop the progression of spasms.  I slept, until about 1 am, as usual.

As I write this, my body is a bundle of pain.  I just used a Shiatsu device to massage my neck.  The device is beyond wonderful.  But, as the disease is determined, as soon as the 15 minutes is up, the muscle pain returns. But, for those 15 minutes, oh my dear, you can put your mind somewhere else!

We have to retrieve my daughter from the airport mid-day today.  I don’t know how we are going to manage that.  I can envision staying in the car as my wife and step-son get her and her luggage from the terminal.

This disease is exhausting.  I am fatigued.  All my skeletal muscles feel like they are on fire. I want my puppies and my bed to rest in.  Vacation was incredible, but I fear, it is time for it to end so I can get back to my cocoon and heal for a while.

My prayer for the new year will be one of acceptance and learning how to live within the confines of this disease.

Thank you for reading, and God Bless,

Jay C. “Jazzy_J” Theriot