Multiple Scleroses: Inside-Out Introduction

Inside-Out Introduction

The theme for my study on multiple sclerosis is "MS From the Inside Out."   The work started out as a way to look at MS from a different perspective. The basic theme is the trauma of MS. A few years ago, I visited a hospital and noted a sign that read "Trauma Center." Intuitively I knew the reference, but for some reason, the name nagged at me.The word trauma provokes visions of a TV ER with gurneys, blood, and madness. I decided to find a better explanation. At last, I found that the classical use of trauma means not only the injury but it also includes social and emotional impacts. For a person with a long-term injury, I added disability as an impact area. These 4 impact areas, injury, social, emotional and disability frame my MS study.

Over time , my career in engineering and computers developed my skill over for information modeling. In my early 30’s I was a manager for a group of engineers and programmers. I was having a devil of a time communicating with staff about job assignments and work activity. A friend suggested I see a psychologist. Skeptical, I made an appointment. I explained the situation to the therapist. After about 20 minutes, the psychologist said you are fine, you just need some more tools. She handed me a book called “Frogs into Princes” saying “Read the first 100 pages. Come back if you have more questions.” I never went back. The book was about neural linguistic programming (NLP).  For me, those 100 pages opened the door to information modeling and enabled many career advancements.

As humans, our brains store unique abstract information models of reality. These models are complex integrations of learned experiences biased by physical constraints, social norms, environmental limits and subjective discrimination.   From the "inside-out" is a statement specific to my information models.  When doing information modeling, sometimes new and unexpected perspectives emerge. The Blog has a few topics I find interesting.  My study includes impact models for injury, social and emotional areas.  A common theme in many of the models relates to the injury model.

Because MS affects the central nervous system resulting from loss of myelin around the nerve fiber's axons, the effect is loss of quality-of-life. Over time the intervals of immune system attacks remove axon myelin. When the attack occurs, the biological wound results in inflammation then eventually scarring and disability. The clinical name for the process is a relapse, an attack, and remitting, interval between relapses.  However, as a person living with MS, the clinical explanation omits an important consideration of living with neurological damage. When an MSer experiences an attack, we go to the neurologist to confirm the relapse. If the experience is an attack, the treatment is an infusion of then steroids to promote remission. My model changes the clinical model from the relapse/remittance to an event model relapse/remission/remodel where remodel is the period between relapses. This definition of remodeling became a common thread in my MS study.

Remodeling occurs constantly in life's events. I consider reframing and reshaping as two general categories of remodeling. Reframing usually refers to modifying the psychological impact and reshaping usually refers to adapting to the physical impact.  Generally reframing and reshaping are codependent changes acting as twisted wires bonding the new model.  

Consider a common life event of getting up from a chair, walk across the room and out the door.  A microscopic analysis could demonstrate millions of coordinated model events occurring in the event's processes. Fortunately, remodeling can be effectively recruited by common practice.

Engineering: Test for Completeness and Goals

Test for Completeness and Goals

Contonx: Mind-It Training Log

Contonix Mind-It Training Log

Bicycle: The MS Bike

Joseph’s MS Bike

Joseph’s MS Bike explains Multiple Sclerosis.

While at a yard sale, laying on the lawn was a dirty old steel bike for $10.  Something about it attracted my attention. The rusted chain hung off the crank gears. The shredded cabling rubber dangled out of the shifter.  The bent wheels would never roll.  The seat rotted away a long time ago, leaving only the metal frame. The logos and markings were long gone. For an offer of $5, I took it home and stashed it in the corner of the garage, and I forgot about it. As an ambassador for the National Multiple Sclerosis Society, I give talks about MS and my life with MS. One morning, a dream memory remained. In the memory vision was that yard sale bike but rebuilt, bright with new colors that explained MS.  For ambassador talks, I am always looking for a better way to communicate MS topics and issues.

In a dream vision, I could see a new design perfectly. On the top, down and seat tubes are the words Live, Ride, Believe. The neuron painted on the head tube and forks represents the dark mystery of MS hiding its cause and cure. The lighter spots on the tubes show where MS attacks the myelin on the axons leaving its scars (sclerosis). The orange is for all MS heroes who help MSers and support efforts to find a cure. The white is the belief that MS will be cured. On the chain stay tubes are the words “Stop MS”

As we all know, seeing something in a dream and making it come true are two quite different stories. The yard sale bike was a steel frame fitted with 27-inch wheels, 10-speed gears, and downtube lever gear shifters. The off the drop handlebar hung what were once the brake levers. The bike vintage was in the early 1970s. In the dream, the new components replaced the original components. The frame and the fork remained 

The MS Bike took weeks to build. All the components had to be acquired.  After sandblasting the paint and rust off the frame, a new powder-coated paint made the frame look new just off an assembly line. Wheels and gears, cables, brakes and shifters, handlebars and a seat, and MS Bike was ready to ride.

The dream became true. The Multiple Sclerosis bike story begins at the head tube where the neuron and axon image shows the dark mystery of MS,  The yellow spots on the neurons are the scars from the MS lesion. The orange is for all the people who have MS, the support partners, and all the people helping to solve the MS mystery.  The white is the belief MS will be cured.

On the top tube is the word "Live", the down tube says "Ride" and the seat tube is "Believe". "We live with MS, ride through MS's challenges, and believe there will be a cure."

The MS Bike is Ready

Parade Ready 

Multiple Sclerosis: MS From the Inside-Out ~ Evolution

MS From the Inside-Out ~ Evolution

In 1989, at 40 years old, I was diagnosed with multiple sclerosis. Then in 1993 was the lottery for the first MS disease-modifying treatment drug, Betaseron. By 1996, disability forced the end of my professional career. For the next few years, I continued to follow the traditional MS clinical explanations and recommendations. In 2008, MS started gaining too much power over me. I needed a new approach; I wanted to change myself and change my MS.

After years of physical therapy, treatment at different offices was the same, I found therapists did not know about neurological therapy and treatment for multiple sclerosis clients.  Unsatisfied with physical therapy, l decided to hire personal trainers so the trainer would work for me and not for a medical office.  I had years of physical therapy, I knew my MS, and I decided I needed help with training, not with physical therapy. At first, the idea seemed attainable, but I soon found for treatment I needed both physical therapy and personal training. However, in a little over a year of personal training, I went from occasionally walking with two canes, weighting 300 lbs to riding my fist Colorado Bike MS 150.

When I started training,  I could not find a personal training program that focused on MS.  Before my first personal training session, I knew I would need some techniques to use as the models for the program. Within a few sessions, the idea for the model revealed itself, "rebuild the connections that MS took from me." That idea of rebuilding connections grew into a program I named " Connection Toning." During the early training years, I training by intuition, following the mantra "tell the brain what going to be trained, train the brain, tell the brain what was trained."  Meanwhile, I still had the neurologist visits, the pills, and the disease-modifying treatment injections. And eventually, physical therapy, psychological therapy, occupational therapy, neuropsychology evaluations, nutrition counseling, support groups, and home exercise programs all again became part of my MS life. The mantra evolved, and then, resolved to be "remodel the connections."

MS is only part of an MSer's life. My wife of 20 years is not an MSer, but she lives with my MS too. Our daughter, now living on her own, used to go to MS meetings and sit with coloring books. For every MSer, MS affects at least four or more other people. The clinical replase-remitting disease explanation of MS  does not explain the MSer living with MS, and the impact on others. Species evolution describes the phenomenon of species changes over time. The phenomenon of an MS attack is similar but the change occurs in lifespan. Every MS relapse-remitting cycle causes a persistent lifestyle evolution change. The change affects the MSer and support partners. 

Initial drawings of "Multiple Sclerosis Trauma Evolution" began in 2008 while trying to understand how remodel training fits with the clinical models of MS symptoms.  As the person who experiences MS symptoms, my perspective was from the inside-out view. And the clinical perspective is from the outside-in view. Since both views are for the same symptoms, the same perspective should allow for both views.  The clinical model used the terms relapse-remitting to describe the cycles of symptoms where remitting is the time between attacks. 

The neurologist's outside-in MS explanations describe the three types of MS progression.  As an MS person, MS affects me from the inside-out. The clinical MS progressing types are variations of release-remitting cycles. My MS life with MS knew that between the relapses, something else happens. I experience MS as a series of events. A relapse event triggers treatment for a remission event. After remission is a pause until the next relapse. During the pause, I trained to adapt to the damage caused by the relapse. I realized the pause is another event, and the pauses' training's purpose was to remodel the damage, not just to adapt. The inside-out view is three events, relapse, remission and remodel.

As part of my sessions with the trainers, the term adapting did not reflect the essential purpose of what I needed from training, which is to identify and rewire the MS damage. The name remodel, as a term, describes the three challenges,  identity the trauma, impact assessment, and remedy.  Remodel is a process that begins with identifying the lesion damage, determine the lifestyle impact, and work to remedy a lifestyle.  (Over time I developed my technique for remodeling; provoked fatigue to identify the damage, therapy experts for impact assessments, and training methods for remedy, I hope others can develop better techniques.) 

In other posts, I describe my methods for remodeling. This post explains how both the outside-in and the inside-out description of MS trauma is relapse-remission-remodel. I retired as an Ambassador for the National Multiple Sclerosis Society. When I attended meetings with other MSers, many people told me their MS story. We know the statement, "No two people with MS have the same MS symptoms." Truthfully, those words is the same for most things, "No two people live the same life." "Everybody is different. "Everything in nature is different." In life, the human mind creates models of similarity that makes things appear the same. For training, I needed a better way to explain that remodeling is life long and not just an event between relapses. Another statement we hear about MS is, "No two relapses are the same." The Multiple Sclerosis Trauma Evolution drawing illustrates the relapse-remission-remodel definition; it does not illustrate the lesion's trauma. The drawing recognizes MS's trauma life consequences where disability increases and the ability to thrive decreases.

The human voice produces sound waves where no two utterances are the same. Yet, we can hear and recognize the words. The ocean waves rise and fall where each wake-wave are not the same. Yet, we can see and hear the pattern. The term 'eccentric' means instances in a unique pattern, it also means groups of instances in an observable framework. Each sound wave is an eccentric pattern, yet the accumulation of patterns permits recognitions. MS's trauma leaves disability markers as MS evolves with the repeated eccentric occurrences of relapse-remission-remodel. This is MS from the inside-out. 

The drawing shows relapse-remission-remodel as definable events. MS has two dimensions of disease activity.  On-the-surface is the measurable recognition of lesion damage. Below-the-surface is a disease activity that is not clinically diagnosed.  Remodel is effective for both dimensions of disease activity. Brain health is a major tenet of remodeling. My favorite expression in Connection Toning is "Healthy Lungs, Healthy Brain."  The brain requires 20 percent of the air supply. If the MS activity is above or below the surface,  brain health defuses trauma impact and enables remodeling. 

Inside-Out and Outside-In Views

Everybody responds to disability as their own to manage. The clinical model of MS uses the term loss of the quality-of-life to describe the effects caused by increases in disability.  When I asked myself, what does MS steal from me, the list was long. Unsatisfied with the list, I recalled the doctor's diagnosis of my father's death. On the certificate, the doctor wrote the words "Failure to thrive." Looking at my list again, I realized failure to thrive also meant able to thrive. While quality-of-life is a true statement, it is incomplete. My inside-out perspective accuses MS of stealing my ability-to-thrive.

MS not only stole some of my quality-of-life; MS stole some of my quantity of life. Ability-to-thrive means quality-of-life and quantity-of-life. The ability-to-thrive reveals an intrinsic survival power model for will-to-thrive. Remodeling and will-to-thrive have a direct relationship. Each provides a self-supporting resource for the other, and grit is the result. Grit is the will-to-thrive remedy that dampens the long-term eccentric effects of MS trauma. Grit is the seed that feeds remodel.

From storm to calm, From relapse to remission, From remission to remodel, From wave to wake, From day to night, From earth to the moon, From birth to death, From neither the same, From alive to thrive, From change we know, From remodel to thrive, From storm to calm.

Contonx: Everyday Connections

Everyday Connections

Connection toning training begins with learning to be aware of the body's connections to produce activity for movement.

Suppose you are in a room sitting in a chair, and you look out a door and see a bright day inviting you outdoors. You stand up, walk across the room to the door, and all of sudden the wind slams the door shut. 

The normal body movement requires three movement elements for action.  

• Begin with physical prowess to stand. 

• Neurological coordination to walk 

• Cognitive planning orchestrates navigation to the door. 

• Startle reflex combines the movements into a simultaneous action. The door slamming causes a startle reflex that slams the thee elements into a near-simultaneous event.

Connections in MS

In MS, the immune system attacks the insulating tissue myelin around the axons causing 3 possible electrical conditions.

•  A circuit open happens when the axon is cut causing axon loss

•  Resistance increases due to insulation loss 

•  Shorts, crosstalk, happen due to the demyelinated axons touching. 

All three exhibit fatigue conditions sometimes called nerve fiber fatigue.

In a way, the MS fatigue experience is like fainting, but unlike a faint where the person fainting has no conscious awareness, the MS fatigue attack is more like watching from being stuck in a bowl of clear gelatin unable to move.

In my youth, I had mononucleosis. While mono has several symptoms, the main symptom I remember is the extreme fatigue. I was so weak my mother had to spoon-feed me.  In my adult life, I can recall 4 times when the MS fatigue reminded me of being in bed with mono.  The other symptom I remember learning to walk again because my legs had no strength. Some say mono and MS may be related biologically. But, I do know fatigue symptoms are comparable.

Remodel Connections

All body positions require tone.  Muscles, nerves, bones, blood, and mind work together to maintain tone. The most restful posture requires tone. Movement requires millions of changes in tone. Each change requires connections to transfer from tone to tone. The connection itself is a tone.

Trauma disrupts connection tones. Connection tone training is a process for remodeling the damage in body systems to rebuild or remake or construct new connection tones. 

                

Psyc: What not is apathy is grit

What not is apathy is grit.

To understand something ask two questions:

   What not is ....   -- find the opposite

   What is not ...    -- describe something

The brain and the mind always exist together as a mood. Neither the brain nor the mind can coexist without being in a mood. The term mood has multiple meanings. The brain/mind can change moods hundreds of times a second. A mood state is a repeated occurrence of a mood that can be observed as a behavioral trait.

Keep Your Grit

The drawing Keep Your Grit began with the question "What not is apathy?" and discovered grit as the opposite. The change from an apathy state to a grit state means overcoming multiple blocking challenges. Once at a grit state, the same blocking challenges reduce the risk of returning to an apathy state. 

In drawing are eight belief mood states and each mood has an opposite mood. Each mood has two adjacent moods. 

The two risk-reward circles show the two mood change paths for will-to-thrive in one direction and the other direction loss of will-to-thrive. Each path is a continuous experience. Confidence can become doubt and doubt can become confident. Determination can become avoidance and avoidance can become determination. Doubt is the opposite of determination. Confidence is the opposite of avoidance. Doubt and avoidance are risk pathways leading to apathy. Confidence and determination are reward pathways leading to grit. 

At the center is belief. The name could be willpower, love, conviction, view, idea. belief or any tenet of self one holds true to be the source for the will-to-thrive.

Grit Wellness Moods

The Grit Wellness Moods drawing unfolds the eight belief moods to model transition moods between two beliefs moods.  Each belief mood has four transition moods. The drawing illustrates the relationships between the eight belief moods, the sixteen transition moods and the four pathway moods. 

A possible application of the model is an explanation of a person trapped by anxiety is to remodel the risk triggers into constructive rewards passions or to replace anxiety triggers with order tactics to gain certainty.

The drawing shows the moods as synchronous. In practice, mood experience is asynchronous and can be in any mood state. However, with experience, the moods will focus leading to a goal.

The reward statement "What is not apathy is grit." also has the risk statement "What is not grit is apathy." 

The two drawings are models for identifying moods and explaining mood change. The name I used for the moods are labels that I understood to best define transition states. 

Something to think about.

If every mood has a transition mood, what is the transition mood of the transition mood? The drawing shows 4 levels of transition moods. Each level is a transition mood. The three additional levels remain undefined for the Keep Your Grit model. The interesting question is what is W, X, Y, Z.