Category Archives: Accomodations

So What Now, 2020?

Well, I have some ideas I would like to put into reality for this year. There are no advocacy groups on social media for idiopathic neuro-muscular disorder.  There are advocacy groups for named disorders, but none for the unamed varieties. I feel there is a big grooup of people out there that would love to have a place to converse about  their issues.

The group will be heavily moderated. As, if someone attacks someone, they will be gone. It will be a haven for those that need to speak of their issues. I have guidelines to write before I make the group publicly available.  My hands don’t always like to type. My voice is not always conducive to voice recognition. Thus, the writing of the needed guidelines will be my biggest hurdle. Not because of lack of direction, but be the physical logistics behind making said guidelines.

I don’t wish to speak of my issues any longer unless it is to help someone else.  This will be a challenge for me as many times, my issues are all that I have. But, my hypothesis is that communing with others in similar situations, we will begin to share a camaraderie transcending our issues.

We will see out that goes.

Another idea I would like to bring into reality is a local advocacy for physical accommodations in the infrastructure of my home parish of Terrebonne. The structural accommodations for the mobility impaired are severely lacking. This will require me to address the parish government and exercise diplomacy to sway their ideas to including mobility issues as default in their machinations.

A lofty goal. Jay as advocate for the voiceless. Going to be a rough goal to accomplish, but it is time to try.

God bless us, all.

Jay C. Theriot

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.