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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
It is almost twenty-four hours since my second 10 microgram increase. I am now at 310 mcg/day. I am able to use my legs slightly. I just walked for about 15 minutes and my left leg has become knotted. But, I walked for a short while, where walking was impossible before. I’m now back in the chair.
So, the game is afoot. Will I reach an acceptable level of functionality prior to maxing out the Intrathecal Baclofen, or will I stop breathing? Which will come first? That is the question of a lifetime for me.
Due to the reaction ITB has with high CO2 levels, sleeping without my CPAP could be a fatal event. When the level of Baclofen gets high enough, it will seep up my spine, making its way to the medula oblongata. If the CO2 is too high, the body goes into shutdown mode and I stop breathing. This is what happened on September 7th, 2017. That day I felt the presence and the warmth of the Trinity. I can never forget them. I also felt the terror of Hell. That, too, I will never forget.
This is the game we are playing: raising the level of the one drug that can help me without killing me. My closest family members have been brought in on the discussion. They have seen me writhe in pain. I think they understand the foundations of my decision.
I see this decision no harder than the decision to get a heart transplant, just with a slower uptake. It will take months to finish the procedure. The goal is reduced destruction of muscles and the cause of pain.
With the knowledge that the Trinity is watching and carrying me, I move forward. I no longer fear death. I only fear losing hope.
Current Thoughts on Medical Cannabis
There is one soldier on the horizon that may provide another weapon in my arsenal. Medical Cannabis. I have railed against using THC my entire life. Everyone around me suggests I use it. Many even suggesting I use the drug now, even prior to it being legal. I believe they are right, but I sit on my principles.
I long said that when a man loses everything, if he be of integrity, he will still have his principles, whatever they are. How do you change your principles when they are incorrect from the beginning?
To those of you that are reading this article and have suggested that I use it now, I am declaring that you are correct and I am wrong. However, I just don’t know how I can get to where you are.
I will likely be prescribed edible Cannabis when it becomes available. All the research I have seen on it indicates it will eliminate much of what is destroying my muscles. I pray that it does what we hope it does. The decision is made, I will take it when I can. Frankly, if offered now, I would likely take it. The constant agony is warranting a subjugation of my long-standing and seemingly wrongly-held principles.
Current State of my Body
Sore muscles! I think I have injured about 80% of my muscles. Additionally strange is my breastbone. I really think I pulled the muscles in my chest hard enough to damage where they attach to my sternum. It hurts to the touch and when I breathe. Yes, it hurts all the time.
I have a considerable amount of healing to do. I have begun a high-protein diet. I’m trying to ingest about 75 g of protein a day, along with creatine monohydrate and BCAAs. I have found them to be key in muscle repair. Additionally, I strongly suspect the BCAAs are responsible for eliminating a large portion of my spasms. Thank God.
Current State of Mentality
Emotionally exhausted. I don’t want to think anymore and I’m tired of saying things like “I hurt”. I’m tired of screaming alone. The physical pain is extreme. I no longer remember what it is to have a day without pain above level 8. Every location of my being is at a minimum of level 4 around the clock. People that love me ask before they hug me because of the pain. I’ve gotten so use to the pain and so desirous of the hug I forego the increase in pain and take the hug. Shaking hands suck. If someone squeezes, it feels like my hands are going to burst open like a squashed grape.
Every motion, movement or task must be thought out in its entirety prior to beginning less I get trapped. This includes going to the restroom. Mundane activities have become incredibly complex and make me mentally weary trying to accomplish them. Showering/Bathing is an operation. I used to shower twice a day without a thought. I performed these without being thankful for the mobility that was needed to execute them effortlessly and painlessly. Mundane activities have become traumatic events.
Current State of Spirituality
Stronger than ever. I am emboldened by the fact that my productions for St. Matthew’s is developing a global audience. I will never know who these people are that are tuning in around the globe, but they are there. I can only pray they are sharing in the same Grace the Episcopal Church has given me. My faith has taken me to the only comfortable place I can be: in God’s embrace.
It is there that I plan on remaining for as long as He will have me. I pray He will continue to give me the strength and determination to continue to serve Him by serving His flock.
Jay C. Theriot
We have a running joke around the house about my voice.
You see, when my muscles tighten, they tighten everywhere. This causes some weird things to happen. Now, we can choose to laugh or cry. Frankly, to maintain (in)sanity, we choose to do the former.
In a long conversation with my daughter, she explained the physiological changes that were going on in by body during the compression. My oldest daughter is not only band director, but someone that has had a number of collegiate-level choir courses (she loves music), and knows how to control the linguistic qualities of her voice exceedingly well.
I explained to her that I believed the compression affected my voice in three areas: 1) the voice box, 2) chest and 3) diaphragm. The pharynx is compressed, giving a larger opening of the flaps as they could no longer close tightly. 2) The chest became solid. This made moving air a challenge. The result was a long steady exhale. 3) Similarly, the diaphragm sinks low and I must work hard to fill my vital capacity and control the flow the best I can. However, there are occasional spasms which momentarily expel a considerable amount of air through the column. This results in a rather loud burst.
My oldest, suggests the characteristics of the even are very similar to what a bass oral perform does to sing very low notes. And, indeed, I can go about 1/2 octave lower, or more, than normal when I go into my compression.
The overall tonal quality is humorous. However, I must apologize. The fact that we giggle about me sounding like our beloved LSU Coach Ogeron, is not a slight. Coach O’ is an awesome coach for a wonderful institution. I am not. I’m just me…. sounding like his distinctive voice. Indeed, we can listen to my voice transform from a semblance of normal to that wonderful man’s linguistic style.
Everyone near, generally rolls with laughter, once my inner circle begins giggling. We generally have a lot of fun with it as I reach for my Lortabs and Zanaflex.
There are many silver linings. Occasionally, we just have to frame them the way we want to see them.
Life is a many splendored thing. We need to learn how to love it in all of it inglorious idiosyncrasies to respect and enjoy the glorious nature of the day, when He gives us.
In Christ’s name!
Jay C. Theriot
My life has become a huge chemistry experiment. One of my main problems is that the medication that directly treats my paraplegia my body is overly sensitive to. The end result of and over medication is the cessation of breathing. It happened a year and a half ago. It really was not that much fun.
I am now at a point in my disorder that my muscles are crushing my body again. I exist at pain levels above 6 for about 75% of the day. This renders me completely incapacitated in the evenings and severely incapacitated the rest of the time.
To fix this issue we are going to start stepping up the amount of medication that gets injected into my spine very gradually. The idea is to reach a level where the pain is acceptable but I can still breathe.
This sounds crazy, but we are now aware of the indicators of an approaching overdose. With close monitoring I can get to an ER to begin reversing the process should the need arise.
My muscles are so tight that typing on a keyboard is difficult. It is one of the reasons why the number of articles that I’ve written in the last 2 months have dropped considerably. I can still type, but not anything of length. I’m writing this article with the help of voice recognition on my cell phone.
I am now back to once a week visits to my neurologist. It is a side effect going to him when you are near your worst. I was in his office when it felt like my muscles were tearing from my bones. My wife was nice enough to join us via cell phone and explain to him the frequency and intensity my issues.
It’s got things rolling. I am now looking forward to beginning the dance.
Jay C. Theriot
This week was rough. It began with an inflamed sternum, humped with a wheelchair assessment and finished with me not even being able to try to walk a step.
All I can think of is the following:
5 Keep your lives free from the love of money, and be content with what you have; for he has said, “I will never leave you or forsake you.”
It doesn’t matter what I don’t or can’t do, for He carries me and will never leave me. Be this journey rough or interminable, as it oftentimes becomes, He will not forsake me. I am never alone.
I have a path. I don’t know where it will lead me. I know how I got here, and I am here. I occasionally curse it as I experience frustration, anger and rage. But, it is the path that He gave me to walk with Him. For that, I am content.
Jay C. Theriot
I’ve often claimed this “Journey” affected several areas of my life. One of which is psychological. Today, I want to touch on the psychological. I feel I need to. I need to get the stain off my heart.
I just feeling dealing with one of the aspects of this disorder I don’t write about. Yes, as frank as I am, there are lines I do not cross.
In the process of finishing dealing with me, I found myself facing a wall of photos taken of my nuclear family. I was filled with rage. I wanted to rip all the photographs of me from a few years ago off the wall. I looked so happy, so capable. This is not the “me” I see today.
Today, I see a man that is happy to be able to fix his own pot of coffee, serve himself a cup and drink it without spilling or breaking anything. That is a great accomplishment in my life at the moment. Self-dependence is slipping as are my legs. I sometimes think that it is hard being me. But, being me is what I must do.
There is darkness in me that I turn to my spirituality to lighten. My dependence on the Word doesn’t mean there is no darkness in me. There is much. The more the darkness grows, the more I attempt to face the light and the more important the light becomes.
There is considerable impact on what constitutes “Me” that has been killed, mashed and then reformed. I’m beginning to think of myself as someone who has mentally died and then been reborn. Similar to the spiritual rebirth that many Christians demand of themselves. However, this is considerable more tangible. The person I was a scant three years ago is gone, forever. As time goes on and the disease marches on, I will continually have to form, destroy and reform who “Me” is. The transformation is becoming a continuous process so that “Me” is an ever-changing definition of oneself. It is exhausting.
I feel the need to stop trying to figure out who I am, but I am afraid that I forget who I am in the process. I can see that is extremely easy to do. I sometimes wish for a vacation from myself. I think that is why I forget that walking without assistance is an impossibility and I fall.
In Christ, as He carries me,
Jay C. Theriot
Many find it strange that I don’t pray for healing. I thank the Lord for every breath he gives me, but I don’t ask that he makes them sweet.
I have accepted my path. it is not of my choosing. On my journey, I have stumbled upon this verse:
Proverbs 16:9 “In their hearts humans plan their course, but the Lord establishes their steps.”
I find it very close to my philosophy. Years ago, I confided in my Priest, that my prayer was to be able to serve the church in a deeper way. My disability, in part, is a fulfillment of those prayers. My situation is so erratic that I cannot do anything that would have a deadline. The work I am doing with the church has no deadlines. In fact, my work went on hold for two years while I healed enough to begin serving again.
I don’t fault anyone for praying for my healing. I feel it is an honor that they would speak to God on my behalf. However, I do pray that they accept that it is His will that I am this way. He has me as His servant, which is where I hoped I would be.
My pain is incessant and great, but there are moments of clarity where I can produce things of worth. In all, this calamity has shown me how deep God’s love and the love of His congregants can be.
I remain in awe of His power and Glory.
Jay C. Theriot
Yesterday, I ended my post with a question about whether it would be better to remand myself to a wheelchair permanently as to prolong my potential involvement in the universe.
My wife offered a simple answer: If I leave the house, I’m in a wheelchair.
My issues go critical in a few steps. My body routinely goes from good to nothing within minutes. The time used to be 20-30 minutes. Now, it’s minutes.
We have learned one the keys to quality of life is management of this disorder. It doesn’t just mean taking the 23 prescriptions that today 45-55 (depending on the quality of my body) meds per day I take around the clock. But, management of physical activities.
We have made numerous accommodations around the house for this disorder. However, those of you that know me well, know that I don’t always do what I should. With this disorder, I pay dearly when I do that. I have finally started listening to my wife, mother-in-law, daughters and pups. When they tell me I had enough, I quit. I don’t listen to everything they tell me, but when they say I have to quit, I’m learning I REALLY need to listen. Astute outside observers notice physical changes in my appearance, voice and motions along with changes in my speech patterns when things start to tank. I don’t realize it myself.
My wife even suggested “Don’t Let Me Get Me” by P!nk to describe my stupidity. P!nk sings “I’m a hazard to myself.” Yep, that’s me. I think I would do myself a lot of good if I started listening to my loved ones. I truly believe they know me better than I know myself.
Jay C. “Jazzy_J” Theriot