Productive, but with it’s toll

#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender

I have completed the design of an online QR Code driven scavenger hunt.  All that remains is the documentation.  I am getting grossly fatigued.  I am pulling out all the stops.  I am driven to get this fully completed by the Saturday.  Three days away.  I have a minuscule amount of work remaining — documentation of the game (one paragraph) and to generate the QR codes that will drive the game (very simple).

I received an emotional blow yesterday.  A few days ago I was invited to a family event.  This is the first such event since I’ve been on disability, almost two years.  I was concerned at first, then cautious and finaly elated that maybe, just maybe, I was being reaccepted into the family.

This came crashing down yesterday.  We were in a family text list.  I have certain members blocked because of their past callous coments.  We, the members of the family, were asked how many were we bringing and if we could bring a dish to add to the available food to the event.

In my replied, I made referrence to my gang being a little late because of marching band practice and having to monitor the game until 5 pm.  The party starts at 5 pm and I live 1/2 hour away.

Having several of the others blocked, I was not aware of what was going on.  Evidently, the rhetoric became venomous and my older sister, the de facto matriarch of the family, put an end to it.

I contacted her directly and asked if my presence at the family get-together would ruin the party.  In her response, I inferred, there were several members of the family that preferred I not be there.  She was not happy, nor desiring to tell me that.  Nor, was I wont to hear it.

I journey on.  My immediate family has grown smaller.  I am sad, that I exist in a world that is ever-decreasing in size around me, and my family cannot see it in their hearts to reach out to me.

I have asked that I not be included in future family events.  It causes too much pain for me.  I have been fighting pain on pain to produce this game for the good of others.  I seek no monetary compensation from it.  If it fields well, intellectual property and future proceeds will be given to my church.

I have huge juxtapositions that are contradictory.  People, everywhere I meet, external to my siblings, have nothing but supportive, nurturing comments to offer.  My siblings reject me. I cannot reconcile the difference in opinion.  This irreconcilable schism is in large one of the motivations for me to write this blog.  Not in retribution, but so that I have a voice.  If the voice doesn’t touch those that I care most deeply for, then it will touch those whom I do not even know.  I want the public to know that having a traumatic disorder is not only medically or physically challenging, but it affects all of your being.  Your relationships, finances, mental as well as physical, all are affected by the disease.

If I can’t help myself, then maybe, I can help others.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

Coffee and Conversations with Compadres

#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender


I tried something different.  I wanted company.  I usually invite a single person over for coffee.  This time, I invited three people over.

The result was amazing.  I found myself just watching people interact.  Not talking to me, but talking to one another. 

I really cannot wait to do it again.  My heart had a lost piece replaced.

The issue, I believe, is when you are a lock in, you are rarely around activity.  Sure, I’ve had people over for dinner parties since I’ve been locked in, but they were about entertaining people. This was cozy.  This was intimate.  I was able to just serve coffee (my mother-in-law did that) and cake (one of my friends made an amazing pumpkin cake.)  We just talked.  They just talked.  They stayed longer than we originally planned.  I was honored and intrigued.

I didn’t realize how much I missed being able to be part of small-group interactions.  I feel emboldened.

Yes, I collapsed after they left.  Yes, there was recovery time.  Yes, there was pain.  But, what I am leaning in living with this disease is you must sacrifice pain for doing things you love.  The intense pain and the threat thereof is the prison guard.  That is what really makes the prison.  You can show no fear.  You just live your life, trying not to over do it too much, and be prepared to pay the price.

In the case of Coffee and Communication with Compadres, the price was well spent.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

Recovery from Lightning Strikes

#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender

Two days ago, I fell prey to a series of “lightning” spasms.  Theses are spasms that seemingly come from no where quickly bolt the body, do excessive damage and then leave.

About six of these struck me in two groups of three.  I followed my Abort! protocol each time to stop the strikes, but too late.  The damage was done.  Particularly hit was my right arm and left leg.  I find this interesting.  In the past, it would only be one side.  My adductors that were injected with Botox were definitely affected.  

The pain was dizzying. Today, the pain is only crazy.  I attribute the “rapid” recovery to super-loading with protein.  I expect to be only in considerable pain tomorrow then regular levels of pain the day after and on.  I’m using the wheelchair almost exclusively.  I suspect I’ll be there for the next few days.  I am looking forward to when I no longer need the chair, except for when I am fatigued..

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

Early Hypothesis Generates Benefit

#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender

About a year ago, I started operating under a hypothesis that stood my treatment plan on its head.  My driving thought was that the pain and disability was caused by my muscles being in spasm constantly.  Thus, they could never heal.  My hypotheses was if I could get my muscles to heal at an accelerated pace, then I could avoid extreme pain and maintain a bit of function.

Signatory Events

The initial evidence that lead me to this thought was two time periods.  The first was immediately following the implantation of the pump.  There was almost no medication flowing, but I was doing incredible.  For about two weeks.  Then things went really bad.  The rapid escalation of pain and the return of the disability encouraged my medical team and I to rapidly increase the amount of Baclofen injected into the base of my spine.

This practice led to the second time period I felt great –the period immediately following my collapse and time spent in the hospital from my potential hasty retreat from the land of the living.  Again for about two weeks following my collapse, my muscles felt fairly good.  This led to our internal joke that if I could just stop breathing for a while every six months, I’d be fine. — hey, you look for humor where you can. When you see the bright light and come back to tell me about it, then you can criticize my jokes.  As one could imagine, this was a very stressful time.  There were many things that happened at the hospital in those following days.  I am likely to write more definitive articles on that time period, as my hands seem to have decided to start working again (thanks Myetin!).

Development of the hypothesis

The two time periods remained an enigma until we developed the hypothesis that addressed the thought that muscles never had a chance to heal, that there were “micro-spasms” occurring around the clock.  The constant spasms continuously injur the muscle tissue.  The damage was not severe, but it did prevent the muscles from healing.  The next round of considerable spasms would strike, further injuring the muscles.  The damaged muscles were then more prone to extreme spasms.

I needed to figure out how to give them a chance to heal at an accelerated pace, and so method of squashing the micro-spasms.  The cycle needed to be broken, or affected in some way.  With this idea, I went to my neurologist.  It was his thought that if I were correct, then as time progressed, things would degrade for me until I would have another collapse or figured out a “reset” of the muscles to give them time to relax.

First Attempt:  The Cocktail

Literally, it was almost a cocktail.  I in the midst of a treacherous cycle of spasms.  I was in my fourth day and this particular event had entered its 18th hour.  I was exhausted, in pain reaching the upper levels of the stratosphere and all I could do is put my head in my wife’s lap and cry.  She had an idea: alcohol is a sedative, her husband loves Tequila.  It was either a double shot of Tequila or a trip to the emergency room.  If I reacted badly to the Tequila, I would end up at the ER.  Same end, different means.  At least with the Tequila, we would have exhausted everything we knew.

Fifteen minutes after consumption, the spasms stopped.  About thirty minutes into the treatment, I grew tired. I slept for four hours and was a knew person when I woke up.  We broke the cycle!

My neurologist mimicked the affect of the Tequila with medications so I didn’t have to worry about the potential deadly side-effects of alcohol.

Second Attempt: The Abort! Protocol

Yes, this works so well, my wife and I gave it a name.  Part of the credit for development can be attributed to one of my wife’s former coworkers.  We continued to look for a method to heal the muscles.  I was finally able to align the damage to my muscles with the damage a power-lifter does to his/her muscles.  My wife and I, and pretty much everyone, began looking for methods of rapid-healing muscles.  My wife’s former coworker suggested power-lifting drinks from a local nutritional supplement store.  We gathered the ingredients and I began to see my muscle function return slightly.  The pain, over the span of a few weeks, was subsiding.

Research was done on the use of BCAA and protein drinks.  I found an excellent article published in a power-lifting magazine.  With a few modifications, the Abort! Protocol was born.

Success: The Abort! Method implemented

I now had a sustainable method of stopping spasms and healing the muscles.  As it turned out, the BCAA will stop the strongest of spasms.  However, it doesn’t address the small ones.

Botox injections into the Adductors

Over time, I blew out my adductors bilaterally.  Adductors are the long muscles originating in your grown and attaching at various locations along the femur.  The treatment was Botox injections in my inner thighs to squelch the buildup of extreme pain.

I love Botox now.  Botox, and the Abort! Protocol are my saviors.

Recovery and Small, Persistent Spasms

My pain level, now dropping, coupled with the “awakening” of nerves by Myetin, allows my body to feel things I haven’t felt in a long time.  What I feel when I lay flat and am relaxed are minor contortions and micro-spasms in my muscles…all the time.  They do not stop.

What I hypothesized in the very beginning, when I didn’t think a way existed to prove “micro-spasms,” my body and logic told me they had to exist.  We, under the distant supervision of my neurologist, developed a method of stifling the greatest of pains.  And, it seems to be working.

I still have bad days.  When my body wants to spasm.  It shall.  I can affect a change in the spasm pattern, but the locking of the muscles don’t seem to obey anything.  Not even the prescriptions medications.  The resulting extreme tightness leaves me a paraplegic and in extreme pain.  However, we are working on that.

Credit Where Credit is Due

I find it comforting that we are learning to manage the disorder.  My quality of life is improving.  That is a really good deal.  Moreover, I must explain the use of the pronoun “we.”  “We” are a number of people.  I hope you, the reader, picked out that there was no one person that developed this path.  There are a number of people involved.  It was only by the communal exchange of ideas among these people that I have be able to get this far.

I can’t thank the individuals enough.  Some, I have not and will never meet.  It is by faith, these people were sent to me so they could contribute to my medical successes.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

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20181005 – Day 8 of Botox, 2.5 Months on Byotin

#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender

It’s been a solid week after the Botox injections into my left and right adductors.  Pain levels pre- and post-procedure are astronomically different.  Occasional spasms in the adductors still occur.  However, they are muffled and the associated pain dissipates quickly. I am sooooo looking forward to getting my chest muscles done.

We have reduced the global pain level enough that I can identify a multitude of knotted muscles.  An estimate of about 15 knotted muscles would be fair.  Complaining about the pain inherent to those problem areas seems childish compared to the pain I have felt consistently for many moons.

The Myetin is amazing me.  I have to trim my nails with the bigger clippers or file them down.  My hair is silky smooth and my scalp is releasing oils like never before.  And, I have regained considerable amounts of sensory in areas global to my body.  I’m starting to believe the Myetin is a miracle medical food.

My neurologist added in a medical food called CerefolinNAC. Cerefolin is supposed to help with the overall health of my nerves.  With the combination of Myetin and Cerefolin NAC, my nerves should be on the road to a better health.

The spasticity issues persist.  However, they have changed and I am having difficulty noticing the early-onset symptoms.  My dogs can tell, even if I can’t.  I start getting angry and frustrated because I can’t move.  That is the first symptoms I become aware of.  Then, within a few minutes, my body goes rigid, and things really start to go bad.  At that point, I don’t even like myself.  I take my medications and cloister myself in my room.

Muscle contortions still wake me up in my sleep.  I _really_ do not like that feeling.  Overall, the health of my muscles have greatly improved.  However, I still drop like a rock when the condition ramps back up.  I get fatigued during the process and a length of rest post-event is a must.

My spirit is high.  I can see where we may not be defeating the beast, but we are making strides in my general health.

I realize that even though I feel really good after a treatment, I have to respect time for the muscles to heal.  Monday, I pushed myself.  It’s Friday and I’m still in recovery mode.  But, each day is getting better.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

20181003 Day 6 post-Botox

#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender

I had a major set-back on Monday, Oct. 1, 2018.  I over extended myself.  One of the major problems with treatments that deprive you of pain is that you forget that the underlying condition is still there. You just don’t feel it.

Monday, I forgot this rule.  I drove myself downtown (about a 10 minute drive in a really comfortable vehicle).  Engaged with my beautiful wife at our favorite soul-food restaurant.  Dropped her back off at work. 

A block after dropping her after work, I was made aware that I was in trouble.  My legs… oh, my.  I couldn’t get home fast enough.  Arriving at home, I could barely make it from my auto to my kitchen.  I begged my puppies to get my walker or my wheelchair.  They responded by bringing me toys to play with.

With considerable pain and effort, I made it to my safe area:  My room, with a window A/C that I use to drop the temperature of the room to the low 60s.  I took both a Lortab and a Zanaflex.  My legs felt as if they were coated in gasoline and set ablaze.

My daughter came home from school and packed me in ice.  It helped.

Two days later, I am of limited functionality.  I can walk, carefully, to the kitchen to retrieve coffee and other items.  My walking distance is considerably reduced.  My legs just give out after being in use for more than a couple of minutes. I am going to use my wheelchair going forward to give the muscles time to heal.

I must say that the Abort! method is working well.  I’m super-loading my body with protein and I feel that I’m making a rapid recovery.  Monday was horrific.  Tuesday was humbling.  Today, I’m of sound mind, if not body.  My legs are only lightly on fire.  There is a flicker once in a while.  Prior to using the Abort! method, this path would have taken weeks.  During which time, I would have had more spasms that would have damaged the muscles further.  The Abort! method is giving me a fighting chance at getting my muscles in the best shape possible for the next attack.

I am just incredibly thankful my wife and friends helped me develop that protocol.  It works for me. 

The Botox injections are a must.  After my screw up, about mid-day Tuesday, the pain from the damage I inflicted to my legs started to subside.  The adductors treated by the Botox injections were the first to stop hurting.  The remaining muscles in my legs remained markers of my insolence.  It felt weird.  The area of most damage did not hurt.  I know they are considerably damaged because I can’t use them, but the pain they generate is gone.

In my arrogance, I damaged a good portion of the skeletal muscles in my body.  I have knots all over my body.  The knots are subsiding.  I believe a masseuse would have a coronary attack and demand I stay for a three-hour deep-tissue massage upon assessing my situation.  My body is demanding an incredible amount of sleep.  The body needs food and sleep to repair.  The protein, creatine and BCAA provide the tools the muscles need.  The sleep allows the body to focus its energy on fixing what I broke.

Christ is with me always.  I hope, with his help, these manuscripts help others.  In many ways, I feel like Tycho Brahe waiting for Kepler to make sense of my logging of the planets.  I can see there are laws of motion, but I am too enmeshed in the topic to see the larger picture.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

Patchwork Fabric of Friends

#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender

I am simply amazed at my “Fabric of Friends.”  In the last several days, they have really shown who they are.  They send me jokes, book recommendations, inspirational phrases, phone calls, visits and the like.  All that they give are pieces of themselves.  All are woven into a fabric that brings me great joy.

Before I began this journey, I took my friends for granted. I horribly undervalued them.  I am beginning to see their value.  If you offered me a million, billion dollars, I would not trade one of them.  To do so would be to cut out a piece of my heart.

I sit back and reflect on their individual personality traits and am simply amazed at the fabric they weave.  I am horrible with descriptive words in this area.  The fabric is composed of many diverse people in creed, perceived success, age, gender, nationality and job inclinations.  Each brings a rich thread of diversity into my life.

I thank the Lord for bringing them to me.  They all have my extreme thanks, honor and praise.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

20180929 Day 1: Botox for extreme spasticity

#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender

This is a discussion about initial effects of taking Botox for extreme spasticity of the adductor muscles in my right and left legs. Please realize this is targeting to very specific muscles and it is not addressing the multitude of other rigid muscles I have throughout my entire body limbs and head.

The injections incurred along the adductor muscles on the inner thighs from my groin to each knee. There were twice as many injections on the left adductor as of the right due to the severity of the left adductor.

After one day of having the injections, I feel the need to reduce the oral baclofen which I have been taking. I have slept sleep for the last 24 hours and I feel drugged. I have attended a local social event. It was a craft show at the local Civic Center. I was not doing well upon arrival. The stringent activity required to get out of the car, and into my wheelchair, and into the building took its toll. After a while my wife pushing me in the wheelchair, I was able to recover some.

I was startled to see how many people I knew attended the event. I was especially happy to see one of my former coworkers, with which I shared an affinity for a coffee break. I continue to miss work with these wonderful people dearly.

I barely had enough energy to make the entire floor. I had to request that my wife get me out of there and dump me at the house. Where I am now, drinking a BCAA to fight off cramps.

I am having to write this article through voice recognition, as will be the method primarily used to compose articles going forward. The acuity of my hands to press the keys that I need them to has degraded to the point where voice recognition has now become a necessity and not something cool.

Upon leaving the event, I was reminded that the Botox was specific to only two muscles. The issues I have with the remaining muscles of my thighs do not make me happy. I am glad that greatest offenders have been silenced. However, there is one area on the left adductor, are nearer about, that remains quite painful. As does the remaining muscles in each thigh. The pain is not as dizzying as the two silenced muscles, but I will not be playing football anytime soon.

The muscles forward of my armpits continue to be an issue and are exacerbated by their use to compensate for the lack of my muscle ability in my lower half.

I have a marvelous wife that understands the anger I feel at my body for abandoning me. I hope that one day she will understand how much she truly means to me. As I truly can be difficult to live with. I just learned that my dictation software will not allow me to say a curse word.

In Christ!

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

Sometimes, being honest with yourself is the hardest of all

#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender

I just embarrassed myself.  I promised to be honest on this blog and so I feel I must.  I promised to post the bad as well as the good to give an appropriate impression of the thievery of which this disease is guilty.

My current thoughts are that I should not bother leaving the house alone ever again.

I just injured myself trying to get to a church function.  I was impatient and should have waited for assistance, but didn’t.  I ended up hurting myself.

I am sure I will redouble my efforts in the near future.  As for now. I just want to hide from everyone.

My beautiful wife doesn’t feel adequate.  She is comparing herself to others that are thrust into the caregiver role.  She doesn’t believe she is handling the situation as well others in our predicament.

I wholeheartedly disagree and implore that she look at the situation holistically.  Most people in her situation do not have as much to deal with.  This is not just based on my ability/disability, but many other factors. 

For one, my age.  I will likely be on this earth for another forty years.  Not, a short time to deal with these issues.  I still have hopes, wants and desires that I will likely never fulfill.  These weigh heavily into the equation.  She has a successful career that we cannot afford for hear to walk away from.  It would be nice for her to be able to be at my beck and call, but she is not able to do that.

Others have family members or friends that visit and provide input.  My wife and mother-in-law are largely, my only source of interaction with adult humans.  The rest is down through the anonymity of the Internet.  I cannot get out and visit with people.  When I try to, the toll on my health often makes the visit untenable.  The end result is she is the sole pipeline I have to humanity.  I don’t listen.  I need her to listen to me, as she needs me.  I don’t provide her with the ear she so needs and deserves.

I am being a vampyre. I suck the life out of her and give little but agony in return.  It is not she that is not sufficient, it is I.

I hate what I have become.  I accept it, but I still despise it.  My neuro will be administering Botox, come this Friday.  The emotional cost could be severe.  Their is a chance of complications as one of my Kennedy brothers has so informed me, and pointed to a clinical document that condemns the process for Kennedy Patients.  Frankly, I have been above level 5 pain consistently for over two months.  My resolve is wearing thin and I don’t know how much longer I can tolerate what I am currently going through.

I am praying for the best.  This Friday is the first of four injection sites.  WE are doing the worst location first.  The procedure will take some muscles out of the equation semi-permanently.  I pray we are doing the right thing. I can’t bare the thought of becoming a larger burden on my wife.

As we used to say long ago, “This life sucks.  Can we start it over?”

Pray for my wife.  She doesn’t deserve what I am putting her through.

In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.

The Valleys and Peaks Widen

#KennedysDisease #SBMA #Success #ExtremeSpasticity #AcceptanceWithoutSurrender

I have not written in a while as I have been in great pain.  Pain which rivals that which I felt in the beginning.  Through it, a phrase a nurse told me over a year ago echos through my head, “Pain, means you are alive.”

I started taking a product called Myetin about two months ago.  Since thin, I have regained the senses of touch and taste.  I can now feel the wind bristle the hair on my arm.  I can feel the small ridges on the flooring touch the bottoms of my feet.  Yogurt tastes stronger than it has in years.

I can only accredit the return of my senses to the healing of my sensory neurons.  Healing nerve cells on a molecular level is what Myetin is supposed to do.

Myetin is a combination of two elements:  Biotin and NAD.  The combination of the two have marvelous healing properties.  My hair has grown soft.  Very similar to a new born’s.  My nails are thick and strong.  My sensory nerves are gaining feeling.

I have found a routine they go through when they return.  My brain interprets the new signals as pain for several hours.  And, then, it is like my brain remembers they are not foreign signals, but the way it is supposed to be.  The first sensations are severe.  Then it levels out, and the use of that sensory nerve is normalized.

I wonder if that is why I have been in considerable pain.  I am back to feeling like my muscles are tearing themselves from my bone.  For the first time in over a year, almost a year and a half, I feel pain reaching level 9 out of 10.  I had to remember the feelings I assigned to my scale.  Level 9 was when you fell in prayer and meditation, asking God not to give you any more pain.  You feel that there is nothing in the world that rivals what you are suffering through.  Level 10 was where I am no longer lucid. In the early days, I existed at level eight and above.

I wonder if the healing of the sensory nerves are allowing me to feel what is happening in my body.

Everything hurts.  Even my lips.  I can feel pain everywhere.  Pain means you are alive.  I wonder if the nurse was unwittingly correct in her statement beyond wisdom.

I am in great pain because my sensory nerves are coming back.


In Christ,

Jay C. “Jazzy_J” Theriot

Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on –> see: irc:// You will need an IRC Client such as HexChat to connect.