It’s been a while since I’ve posted a status update and I feel there are some things that need explaining.
The slow-progressive neuromuscular disorder is still there and still is slowly progressing. However, my wife and nuclear family have learned to better cope and manage most of the symptoms. New ones are popping up, on occasion, and the challenges slowly increase. Warning, what follows may be more than you want to know. You may want to scroll on by.
Physiological Issues and successes:
Starting in October of 2021, I began a series of quality of life enhancing operations that have enabled me to get out of the wheelchair more often. The first was the creation of a port in my tummy in to my bladder, which no longer works, called a “super pubic catheter.” Without it, my body quickly goes edemic. That is, I fill up with fluid and get sick, quickly. I occasionally tap it of to have a little freedom, but anymore than a couple of hours a day and I get sick.
I’ve had two spinal surgeries to decompress nerves and several procedures. The result is that osteo-wise, my skeletal system operates in a more normal fashion. Nerves and muscles notwithstanding, I often can walk short distances. Long distances, and I collapse.
Thanks to medication, the spasms have reduced in frequency but not voracity. I still rip muscles when I have a spasm. I frequently have bruises from the blood seeping to the surface from the torn fibers. Coupled with the spasms is extreme spasticity where my muscles just pull taught. I take a massive amount of several different muscle relaxers to counter the affects.
Neurological pain is rampant. We still experience “Christmas trees.” If you can imagine every pain receptor in your body firing at once — that is a Christmas Tree — like lights on a Christmas Tree. The pain is real and agonizing. I take a host of nerve-pain reducers like gabapentin and others to squash the pain. I don’t miss these meds, not even for a couple of hours. The pain is unreal.
Twitches and random movements are being brought under management thanks to some rather expensive medications. Thanks to all you taxpayers out there and the VA for many of these meds. Most are common, but the deuterobenzene is about $4,000 a month and is a life-changing medication. Without it, I can’t control my limbs enough to even walk or feed myself.
My ataxia is just going crazy. I can sometimes get my original voice back when I sing or read aloud. Two Sundays ago I read in church and didn’t recognize my voice. It was like an old friend that came to visit. It lasted the whole reading then vanished. I no longer wake and have my original voice. I’m 100% in “Cyber Duck” voice now.
I’m now experiencing blackouts for about two hours at a time. They randomly appear. We are in discovery, trying to find triggers and eliminate my cardio-vascular and pulmonary systems as the cause. My lungs are clear and my EKG is beautiful. We are waiting on a cardiac-stress test to completely eliminate my CV as an issue.
The mechanics of the process seem to be something triggering the parasympathetic response sending my body into hibernation for two hours. I’ve had minor issues with this in the past, but now, the issues have resurfaced and are becoming more severe.
Psychosocial challenges:
My nucleus of a family, mother- and brother-in-law are my support group. My physical isolation from my blood kin is near complete. As one put, “…do not want to interact with you in any way…” about a week prior to my mother’s funeral. The rest of the family, save one sibling, did not interact with or my kids. I blame myself and this disease. If it is what the neuro suspects it to be, then it will shed some light on the matter.
My circle of contacts grows by me being a member of NISSA, an old-fashioned C=64-based bulletin-board system a bunch of old SysOps and myself have resurrected. I help mostly with Linux-based virtualization and networking issues. The other members are the fortes when it comes to the actual functioning of the boards and network in general. I’m blessed to be a part of it.
Future, Next Steps.
The VA is paying for a massive genetics panel to be done on me. Premier Genetics out of Houston is performing a 938-test panel to find out what is going on. A name would focus my medical plan and provide some hope or focus for my kids and nephews, nieces and their progeny. If this an inheritable disease, then the mutated genes could affect the same people that ostracized my kids and I. It is very ironic.
My psychiatrist, psychologist and counselors all say genetic tests are transformative life events. The genetic counselor said once the results are in and we are educated, we then have big decisions and discussions to make.
For my children’s sake, I pray we get an answer soon.
Thanks for reading,
Jazzy J