Category Archives: Data

Supporting Documentation for “The Method”

#KennedysDisease, #SBMA

If you have read Soft Claim of Victory; I think we have a method, then you know the real evil of what we are up against, and what our efforts are to fight it.

My wife and I had lunch together at  a local brewery.  I know the general manager there, and they have incredible food, so it was an easy decision to make.  The manager hadn’t seen me in a good while and I looked much better than last time he saw me… which begged the question, “What’s going on?  How are you doing?”

So, I explained to him about the BCAA and protein drinks.  He suggested I look into creatine drinks for rapid repair.  I did, the documentation for creatine is all about rapid recovery from a run.  Not damage to the muscle.  But, once I eliminated the “creatine” keyword from my search, I came up with this article:  8 Ways To Maximize Your Post-Workout Recovery written by Shannon Clark for Bodybuilding.

In it, they recommend a regimen including BCAA, protein and electrolyte drinks.  The order and consumption amounts differ from my plan.  But, I thought, how cool.  Her plan contains all the ingredients of my plan.

So….  Based on her article, I will do the following: 

  1. On onset – drink a BCAA, quickly, along with taking my Lortab and Zanaflex.
  2. Drink a second BCAA during the event.
  3. After the event, drink two protein drinks.  She suggests 50g of protein.  My drinks provide 25g per.
  4. Fifteen minutes after the protein is down, then 32 oz of electrolyte drinks.

I’m thinking… That’s a lot of liquid.  But, if it can stave off the effects of those blasted spasms, then, I’m game.  It is the first evidence I have come across that supports what we have discovered on our own.  I am emboldened by this finding.

We still don’t have a clue as to “how” to stop the spasms.  Frankly, I don’t think we every will.  They come on quickly (25 minutes from 0 to max), little warning (I feel a slight aura, but nothing I can  put my finger on) and strike deep (they have torn muscles in the process).  Unless I would have IV sedation that would drop me, I don’t have hope of anything being effective.

However, if we can diminish the ability of these events to wreak havoc on my body, my quality of life will soar.

That is where we want to be.

In Christ,

Jay C. “Jazzy_J” Theriot

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

Phases or Faces of SBMA

Phases of SBMA, or two of the many faces of the accursed disease.

In my implementation of SBMA, the disease effaces in two or three distinct phases.

  1. Baseline – everyday
  2. Acute – triggered
  3. Acute – non-triggered.

I have arranged them in the order of their impact.

Baseline characteristics:

This is what my family and friends live with everyday.  It is very limiting and unpredictable.  We literally have to relearn the limits of my capabilities anew every day.  Sometimes my baseline means I have to stay in a wheelchair all day long.  Others mean I’ll still be walking with minimal assistance until 6:30 or 7 pm that evening (those days are very few and far in between.)  The impact on my family and friends are very confusing.  There is no stability or plateau to what I may be able to accomplish that day and it can change on a cat’s breath.

I can and have gone from walking unaided to writhing in pain in a wheelchair within 15 minutes without prior warning.  Other times, my dogs will signal to me ahead of time that something is going to happen.  I have learned to watch them and take appropriate actions.  They have amazing accuracy.  Their warning may mean I have anywhere from a few minutes to an hour before symptoms set in.  I have a theory that they can detect pheromones and/or minor tremors that I don’t notice.  I have noticed that when I take action and cuddle them on the sofa, I can feel the tremors.  It is very bizarre.

Acute – triggered:

There are activities that will trigger an acute spasmodic event.  I originally classified only two phases: Baseline and Acute.  However, as we are slowly getting the disease under some resemblance of control, I have come to notice that there are two types of acute: one I trigger with activity and the other that naturally occurs.  The correct determination of the type affects how we treat these two different phases.  Triggered generally has a short duration of 8-10 hours.  Where the naturally occurring acute phase has no identifiable trigger and will last days, or in some cases, weeks.

We are still working on the correct identification of the triggers.  We know that sustained activity on a good day will trigger an event  in the evening when my body is fatigued.  This will pass naturally when my body has recouped its strength.

The characteristics of an acute phase with a trigger are:

  • very mild, almost undetectable, tremors.  I can detect these tremors when I am sitting on couch relaxing, typing or eating at the dinner table.  Basically, when my body is relaxed or executing an activity that requires eye-hand coordination.  Occasionally, I can’t grasp spoons or eating utensils.  Cutting meat becomes an issue.  These behaviors are very embarrassing as they are undetectable unless you know what you are looking for.  I will look normal, externally, but internally, I have no control.  My wife has noticed that my eyes twitch slightly when I’m in this phase.
  • small twitches.  Fingers, eyes, muscle strands or entire muscle groups will twitch.  Coffee cups get thrown.  Plates get dropped.  Fall occur if the twitching starts while I’m walking unaided.  These are very frustrating as they cause minor amounts of severe pain that fade quickly, however, doing anything is next to impossible.  The twitching is completely unpredictable.  You feel well enough to perform a task, but you can’t.  Things get broken.  I have learned that I need to begin taking my cocktail at this level.  If the situation ramps up, the medications will lessen the blows.  However, if the event doesn’t ramp up, the medications can stop the progression and terminate the event.  I consider this cessation a blessing from God.
  • Muscle contortions or cramps.  These are bizarre, can catch your breath and are usually very painful.  These are the most severe attributes of a triggered event.  At this point, I have no choice but to rest my body.  I usually seclude myself as I get very emotional during this period of elevation.  The pain wearies my mind and I start having very odd thoughts. I think the odd thoughts are my mind’s desire to take me out of the situation.  At this point, medications are administered whether I want them or not.  The efficacy of the medications are barely enough to do more that relax me.  However, with rest, this phase passes in several hours or overnight.

Acute – naturally occurring:

These symptoms occur when they wish.  There is no apparent trigger other than the normal progression of the disease.  My recent record of being in this phase is about 96 hours.  My caregivers’, as well as my resilience is tested. All the “acute – triggered” symptoms occur, however, their duration is unpredictable and rest and medication has little effect in ending the phase.  I would like to say that this phase is frustrating.  However, like Maslow’s pyramid, the physical and mental needs become very foundational.  I don’t care about ability, nor disability.  I just desire the phase to end.  Medication, even my cocktail, has little effect other than to lighten the veracity of the symptoms.  I give a load of thanks to the medication.  After about the third day, my mind is weary and I can barely think straight any longer.  You wish and pray for the end of the phase to come.

There is little ability during this phase.  Even feeding myself or performing mundane activities require a terrific amount of effort.  This is the heart of the disease.  The acute – no trigger phase is something that I could never wish upon anyone, even my greatest enemies (not that I have any – I don’t have the strength or dedication to hate someone.)

I stay secluded during this phase.  Without medication, the contortions of my muscles cause a variety of issues.  None of them good.  I was in an extended phase when I had to leave work.  I was under fairy intense sedation for four days.  In all, I was in this phase from December 2016 until about March 2017 when my neurologist realized what was happening and began prescribing a chemical regimen that lowered my baseline to a respectable level.  I frequently was at pain level 10+ during this phase.  I don’t ever wish to return this level.  It is terrifying.

With proper medication, the veracity of the symptoms are lowered, but not stopped.  They continue until they run their course.  Duration and intensity are unpredictable.  I wear pads during this phase.  Disgusting things happen to my body.

Returning back to baseline – continuing sensory issues:

Everything we have discussed until this point has dealt with the actions of skeletal nerves.  However, the sensory nerves are also affected by this disease.  That is for another article.  My family, friends and I have decided that my sensory issues, although disturbing, are quite the manna to make jokes out of.  My body senses are very bizarre.  We’ll discuss that in the future.

Thanks for reading.

In Christ,
Jay C. “Jazzy_J” Theriot