Pain: 2/10; Ability: 2/10
Although my pain is rather low, my ability level is very low. This is an example of why I say pain is not my primary concern. I have many days like this. Now, to be honest, if I try to walk, my legs will go ablaze with pain. However, standing, at the moment, is at a premium. I reserve standing for making it to the bathroom from the bathroom door.
My mood is fairly good. I think I may have accepted my condition and made the realization that I am what I am. My neurologist has promised to get me my life back. However, I see the desperation in his eyes. I think he is giving up. I have become something he can’t fix. I am an anomaly.
The DNA test for SBMA (Kennedy’s Disease) came back negative. However, we are sure of a few things. The nerves of my spinal column and my medula oblongata are involved and my muscles are in atrophy. SBMA means (S)pinal and (B)ulbar (M)uscular (A)trophy. We are sure it is genetic in origin. We, being myself, my neurologist, my counselor and pretty much every member of my medical team. There is no external cause. There is no disease. Thus, genetics is all that is left. This doesn’t mean that it is generational. I could be the alpha generation. That is, I am the first in my line to have this issue.
My new issues include TIA-like symptoms that come in 5-minute waves. After the fourth or fifth wave, I’m in an all-out spasmodic event. Additionally, the fecal and urine incontinence is increasing. Occasionally, breathing is becoming difficult. The muscles that wrap around my chest tighten so hard that getting a full breath is impossible. The result is higher pulse and blood-pressure.
Tomorrow, I begin a barrage of tests in response to the new symptoms. They include an ultrasound of my bladder, imagery of my chest and neck, and nerve conduction tests of my periphery and groin.
We will be getting the results back in a few weeks. Based on the outcome of those tests, I may be able to start physical therapy (hopefully.)
Riding with the Council on Aging was not a good experience. I was out of the house for about five hours and it destroyed me. I have four appointments back to back. I don’t know how I am going to tolerate the time away. The outcome of the transportation experiment was disappointing. If I can’t provide my own transportation, then I can do physical therapy. If I can’t do physical therapy, my muscles will atrophy quicker.
I have always been a problem solver, and I can’t seem to reason my way out of this predicament. My counselor is helping, but she has her work cut out for her. I am not taking this incapacitation very well. I feel as though I am in a dream and I can’t wake myself up.
A new journey has begun. Where I had a map before, now, I only have trees. There are no guideposts to channel me on my way. No milestones to set. I have taken to playing my ancient video games and focusing on me doing what fun I can have, while I can.
Jay C. “Jazzy_J” Theriot