Category Archives: Life

VA ALS Clinic Evaluation – Initial Findings

Aside from replacing some of my meds and adding a few more, the most interesting mention is the invalidation of a test I had 3 years ago for Kennedy’s Disease (KD) and scheduling a new genetic test for KD in the near future.
For more info on KD and other related disorders see:

Too much information was given. I’m still trying to wrap my head around it all. Basically, the VA is in the fight for the long haul. I’ve got a team of doctors reviewing my case. Occupational and Physical Therapy appointments will be scheduled, medical testing, assessments to our home, counseling, etc, etc, etc.


Jay C. Theriot

201910106 – Update, kinda

What’s happening with me?

I want to make a claim that we have got the spasms under control.  They still occur, but differently.  In the past, the spasms would be grave and rip muscles in a lightning strike.  Now, the spasms occur more slowly.  My muscles start to pull. My “markers” are different.  I notice that if my cheek muscles get tight, I’d better be taking some additional meds and rest.

My spinal column seems to be getting affected. The constant tight muscles are causing narrowing, osteophytes, and a number of other issues with my skeleton as a whole.  My neurological system is taking a hit as nerves are being compressed.

My medical treatment is more of palliative care, and the injections I’m receiving are focused on deadening nerves or relaxing muscles in a target fashion.

My hands occasionally are capable of typing.  However, any static motion causes cramps and spasms.

To be able to do anything, my body must keep moving.

Suspending my head frequently causing painful issues with my neck.  I’m not sure where that is going.  The issue is relatively new and documented on my various medical images generated by MRI or X-Rays.  Likewise, for my lower back.

Fear, is becoming a hurdle.  As staying out of my comfort zone for an extended period of time will drop me and cause days of recuperation if I screw up, I am beginning to dread not being home. Not being next to where I can chill my body or get to my “safe zones” quickly, really is brewing fear. I must break these ideas and overcome them. My method of going out of my home includes taking copious amounts of medication.  Seeing the world stoned, drugged or whatever term you choose to use, is my only recourse of action to be able to escape Eden.

I must do it now. As, I submit this article, I’m going get ready to go to Mass.  My wife is serving on the Altar.  I don’t want to go without her being next to me, but I have to do this for myself. To overcome the fear of pain.

Wish me luck.

In Christ’s name,
Jay C. Theriot