Category Archives: Understanding

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:  https://rarediseases.org/rare-diseases/kennedy-disease/

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.

Hope…restored.

Jay C. Theriot

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