What we know:
Symptoms went critical on December 17, 2016. Originally effaced as a severe sacro-iliiac back pain. After approximately three months of ineffective treatment, I was sent to a rheumatologist which thoroughly examined me, identified neurological issues and sent me to a neurologist.
After another month of tests, it was determined that my chief symptom was extreme spasticity. However, be it known, this is a symptom, not a diagnosis. We began treatment, immediately lowering my baseline pain from an 8/10 to a 4/10. Mid-summer 2017, an intrathecal Baclofen pump was implanted to sedate my spinal nerves.
September 7th, 2017, I overdosed and spent a week in the hospital. Four of those days were in the CCU.
We have since continued to work and refine pharmaceutical treatment of the disease. Much self-diagnosis and self-medication is required, as the intensity of the disease is volatile. Getting the correct dosage is very much like balancing on the head of a pin. If the symptoms are low and I take too many meds, I can stop myself from breathing. Yet, the same dosage when the disease is going full force only dulls the symptoms, and consequently, the ensuing pain.
Structurally, my body is sound. All skeletal structures and nerve-conduction tests return within normal limits. I have a slight latency of conductivity on the left leg. My neurologist blames all my symptoms on my genetic neurological issue.
My symptoms indicate both the spinal nerves and the bulbar nerves are involves. Thus, a DNA test for spinal and bulbar muscular atrophy (SBMA – Kennedy’s Disease) was taken with a negative response. Through research of the disease, my neurologist thinks that I have a variant of SBMA that has yet been documented.
The disease is progressing, albeit slowly. Recent symptoms to efface are lung, bladder and colon issues.
In the area of the lungs, I have developed a cyst. The origin of the cyst seems to be from my aspiration during my overdose. Complicating matters are my chest muscles. The disease is causing my chest muscles to tighten so extremely, that breathing is difficult. Our response was to increase the oral Baclofen dosage and ingest small amounts every four hours, even through the night. I set an alarm to wake me up to take my meds. The decrease in the chest compression has been significant.
In the area of the bladder and colon issues, I have lost control. I have an extreme lack of sensation in this area. I occasionally loose control of one or both. Sometimes, I cannot evacuate either. Other times, they evacuate themselves.
I continue to have sensory nerve issues with “ghost” sensations over my body. I have considerable degradation of touch feelings over approximately 60% of my skin. Sensations of heat, pressure or ants move over my body like clouds.
When I lay silently, I can feel hundreds of micro-spasms firing off in my body. All skeletal muscles are involved. From my face to my toes. Those that are close to me notice the change in my facial appearance. My chest muscles tighten and bulge about 1″ more than normal. My theory is these micro-spasms are responsible for my muscles healing very slowly.
I live with pulled or strained muscles. I have too many to list at the current time as I have taken to falling. What the NMD doesn’t pull, I destroy on my way to hitting the ground.
I no longer drive. Riding in a vehicle as a passenger is problematic. The vibrations of the road trigger a spasmodic event. Traveling any distance from my home involves an increase in pain. Thus, getting in a vehicle to go anywhere is starting to become a psychological issue with me. The Skinner-response is getting the best of me. I have to force myself to go anywhere and my will to do so is weakening.
I have trouble getting dressed occasionally. This is sometimes due to the disease, and other to the after-effects of the disease (pulled muscles.)
My primary care physician fully expects to detect liver damage in my upcoming yearly blood tests. This is attributed to the high levels of medication I am taking. However, this is a trade off. The choice is dealing with the disease to get the pain to a manageable level or writhe in pain 24/7. I have elected liver destruction over the extreme pain.
Depending on the veracity of the disease, I could either be walking with a gait, using a walker, wheelchair or pushed in that wheelchair. The time that I walk without assistance is dramatically decreasing to about an hour a day. With control decreasing, the use of a walker is nearly mandatory. Cane usage has decreased to almost non-existence. Walking with a cane usually pulls muscles in the shoulder of the arm that works the cane.
My spirit has increased. I have nearly accepted my condition. I cry occasionally. My final sticking point is the acceptance that I will likely never drive again. I am working to decide to sell my vehicle. It is the best car I ever had and giving it up is providing me with an intense challenge as it represents a finale.
I have withdrawn my services I have provided other entities. I can’t guarantee that I can do anything. Getting my socks can present an extreme challenge. Touching keys on a keyboard can be extremely painful. I no longer have the will or the energy to harangue people for information.
I am focusing my electronic pursuits in other areas. Retro-gaming and programming Raspberry Pis are my focus. I need to get back and finish my global hurricane site, but I don’t have the cognitive focus to do so.
I have increased my presence on IRC as “Jazzy_J” helping and meeting people. My counselor suggested it as I don’t have to discuss my illness with the strangers and I can behave like a normal human.
Swimming and wading in a pool provides me an amazing sense of liberty of motion. It is exhausting, but I simply cannot wait to do it again. I haven’t felt that free from my disease in over two years.
I believe I have made quite a comprehensive accounting of my situation.
Jay C. “Jazzy_J” Theriot