After two years, two months and eleven days, we have finally arrived at a medical stasis. We’ve been through a hell of a ride. And now, it is time to live. This article will likely be my last for a while. I submit it as a summary and somewhat as a conclusion to this blog.
I am now considered a paraplegic. My diagnosis is hereditary spastic paraplegia. It is a complex case in that it involves sensory neuropathy and muscle spasticity throughout my body, not just my lower half.
My muscles go rigid so quickly, you can see them inflate if you are watching. I sometimes cannot reach my mouth or put my arms down by my side. I am in a battle to get my first real wheel chair.
I take over twenty different medications a day, for a total of about 45 pills on a good day, and almost 60 on a bad day. They regulate nearly every biological function.
My CPAP is likely to be upgraded to an at-home vent as my lungs are being crushed by my muscles. The alternating constrictions and weak muscles are not allowing my lungs to function properly and so they are collapsing. My diaphragm goes rigid, likewise my cage muscles. On occasion, getting breath is a real challenge.
My doctors have instructed to use the CPAP whenever I am stationary, not just when I am sleeping. The increased usage is an attempt to regain some vital capacity of my lungs. Not to use the CPAP when I am sleeping could be a fatal mistake. My wife can attest that if I fall asleep without it, she has to beat me until I regain consciousness.
I occasionally suffer from Uthoff’s Phenomena. Small temperature changes will throw my body into turmoil. Uthoff’s make my disease horribly unpredictable. I can go from walking with a cane to level 10 pain in five minutes.
My blood pressure can shoot up very high, very quickly depending on what systems are affected during a phase.
My voice has become a pre-cog of a downward slide. My voice will degrade, become raspy, dropping about half an octave.
My body releases an oily acidic substance when I’m having issues. This causes my skin to be simultaneously oily and have severely dry patches. The smell only lasts for a few minutes and the dogs and I seem to be the only ones capable of detecting the odor. It drives me crazy. I moisturize continuously.
Over a longer period of time, my condition will phase up and down. A phase will last two months either up or down, with minor peaks and valleys along the way.
Osteoarthritis and osteopoenia are both indicated. The osteoarthritis seems to be exacerbated by the rigidity of my muscles.
Muscle rigidity causes issues ranging from internal tremors, twitches, cramps, Charley horses, spasms to severe spasms which tear muscles leaving bruises all over my body. I am then left with the need to repair the muscles. During the repair phase, my muscles are very sensitive to touch. It feels as my muscles have acid pouring on them. In fact, they are inflamed. I have found using a power-lifters regimen to be helpful in quickly healing the muscles and reducing pain and inflammation.
I lose the ability to speak and think clearly when things get ramped up. I thus choose to focus on the world of spirituality and art at these times. The beauty of a hummingbird, folk music or the Word of God eases my soul and lowers my pain more than any pain killer.
With all this, I look to the future. I am choosing to focus on what I can do, and not what I can’t. I have built friendships over the last few years. I have destroyed some. Those that have been destroyed, I wonder if they ever were friendships to begin. However, as those truly close to me can attest, I am a bear to deal with. Think of it: I have reduced mobility, my speech goes, my frustration blows up and I bark barely intelligible orders. — not really easy to deal with. I’m surprised that anyone puts up with me.
God is with me. I do not hold him in contempt. But, the contrary is true. My only solace is in Him. He gives me what my soul years for and needs. There are only one set of foot prints in the sand, and they are very deep. I don’t foresee a time where there will be two. There maybe, but that will be God’s will.
I have been blessed in that I have been able to team up with people that understand I work very slowly. This allows me to take part in a few programming groups nationally and globally, working on retro-computer equipment.
The retro-computing movement, weather-tracking, photography and digital art is where my focus will be in the upcoming months and years. They are the sources of my personal joy. I would love to see, hold and form a relationship with my grand-kids, but that is just not possible. My absence from their lives is a tremendous weight on me. One that I do not know how to address. So, I remain content watching God’s creatures perform their magic in my backyard, my Eden. As the birds, butterflies, lizards and squirrels come and go at will, so does my imagination.
Jay C. “Jazzy ” Theriot