Thoughts on God

 

Josephism

Josephism

This my list of Josephisms; many are mine; some are borrowed; some are quoted. Years ago, an MS sponsor asked me to sign bandannas for a team event. The team had 25 riders. The sponsor asked that I give each team member have a different quote with my signature. Over the years since,  here and there, I started collecting Josephism quotes and thoughts,

Josephism Quotes 

• Peace on earth did happen, once. Our challenge is to make it happen again.
• Live, Ride, Believe.
• HERO means Help Everyone, Respect Others—time, talent, treasure, and tenacity.  Tenacity – never give up.
• Every step forward loses where it came from. 
• Even to turn around and look behind is a different memory. 
• Every step forward loses time. 
• To turn around and look behind loses time.
• Every step forward is a new precious present. 
• Our challenges grant us the gift of many precious presents.  So happy you are collecting them. 
• Thinking creates thoughts for stories. 
• You can only use one sense at a time.
• My brain is the perfect chaos engine, happily enjoying every distraction. 
• My writing, like my thoughts, is a scatter diagram of incomplete articles.
• My brain is happy as a chaos generator.
• Once I had a dollar. Once I wished for a dollar.  Once I earned a dollar.
• The term money means title, value, use, and asset. In the bank (use), I have (title) 10 (value) dollars (asset). 
• An invoice is a demand for money; a payment is a transfer of title.
• Space and time are artworks of the mind. 
• Ideas are always ideas.
• A found penny is a treasure and a misfortune. 
• Family first. 
• A term is more than a language artifact. It is a stakeholder of ideas.
• A term is the end of a thought and the beginning of communication.
• Failing because of quitting is not the same as quitting because of failing.
• I am me, an individual. 
• A horse my refuse water, my job is to provide the water.
• No one gets an education. Education gets you.
• To thrive is to change.
• The future and the past are stories.
• A life is many lives.
• Devote time to the people you love.
• Every intention is a precious present.
• Thrive with determination.
• When chasing rain mills, you know the direction of power.
• The universe of men and the universe of women are two dimensions.
• The mind’s eye sees its heart’s perspective.
• Only we can determine our fatigue.
• Three, one, two, one, three. 
• WWJD - What would Joseph do?
• Left, right, left; count, cadence count; 1 - 2 - 3 - 4; 1 - 2 - 3 - 4.
• Peddling up-hill is life-affirming. Peddling down-hill is fun.
• A rock in the road is a signpost to a clear path.
• Don't look at the pothole.
• In every happy heart, there is love.
• Love is a great spin that lasts forever.
• Bikers ride in the sky because the sky starts at our tires on the road.
• Remember to breathe from the gut.
• The brain is a discrimination engine. The mind is a biased engine. 
• I do not accept racism. 
• The reason for war is economic power. 
• Tomorrow you may wake up dead.  
• Courage is only required for something you fear.
• Bicycles are energy star rated.
• Another name for the future is life.
• A bicyclist always has the wind in their face.
• I was disabled; now, I am adaptive.
• In every happy heart, there are beats for at least two people.
• Real men have happy hearts.
• To speak for itself, someone must hear it speak.
• Here in the hell is the bathroom? I gotta piss.
• First, learn 3 words, “I love you.” Then learn 2 words, “I surrender.” And one word, “OK.”
• Smile! Display your happy heart.
• Biking, like wisdom, is applying the right leverage in the right place at the right time.
• Sternum up, smile, see the world, shake it off, suck the gut, set intentions.
• SAFE: Strength, Agility, Flexibility, Endurance; the finite wellness elements of conditioning.
• Fatigue equals vigor minus endurance.
• What not is the truth? What is not is an opinion.
• Ability-to-thrive equals quality-of-life and quantity-of-life.
• We are eccentric beings in an eccentric universe.
• The mind is a bucket full of moods.
• To overcome one challenge challenges all challenges.
• When walking, what foot moves first?
• To see is the hardest part of the picture.
• “Last one, best one.”
• All exist in the Goodwill Grant.
• Failure to thrive is not an option.
• I am this for now, and that already passed.
• Time is a learned concept of the human mind.
• Time is absent in nature. 
• Truth enables space.
• Not am I not.
• Honesty is the power of movement.
• I refuse to be depressed. 
• Respect permits identity.
• Trust is the first principle of a relationship.
• Love, faith, and hope bond family.
• The trinity of fatigue: physical prowess, neurological coordination, cognitive planning.
• A broken stick has 3 parts, 2 pieces of wood, and a break.
• When filling up, make sure to clean the headlights.
• 40 squats a day.
• The mind trains the brain; the brain trains the body.
• I am what I see I am. 
• Behind the mind of a great engineer is a great artist.
• Thanks for your service.
• The axle conquered the American West.
• Frustration is the grantor for inspiration. 
• A coin and a prayer are both collaterals.
• When sitting, the toes are the first to stand.
• Federal and state civil statutes are business rules for contracts and the use of money.
• The word money means value, use, asset, and title. Payment is the transfer of title. -- I have (title) 5 (value) dollars (asset) in the bank (use).
• Fear threat reactions: fight, flight, freeze, fawn, fade, fold, forget, finesse.
• Volunteering is a coin with two sides.  The head side is a risk to the organization. The tail side is a risk to the person.  Volunteering for a charity is a risk for the organization. Volunteering of the draft is a risk to the person.
• Apostle's Challenge: form, fit, function, finance, fabrication, family, fix, feature, fact, fear, fubar.\
• Wellness modifies yesterday, connected by empathy, grow with affinity, live through change, the journey for oneself, together, experience life, remodel is an adventure.
• A value is more than money: Abundance, Accountability, Achievement, Action, Adventure, Ambition, Awareness, Balance, Beauty, Being the Best, Calmness, Cheerfulness, Clarity, Comfort, Compassion, Competition, Connection, Contribution, Control, Courage, Creativity, Curiosity, Determination, Discipline, Effectiveness, Empathy, Energy, Enthusiasm, Excellence, Fairness, Faith, Fame, Family, Flexibility, Freedom, Friendship, Fulfillment, Fun, Harmony, Happiness, Health, Honesty, Honor, Humility, Independence, Integrity, Intelligence, Intimacy, Inspiration, Kindness, Knowledge, Liveliness, Love, Money, Nature, Passion, Peace, Perfection, Persistence, Philanthropy, Power, Respect, Security, Simplicity, Significance, Spirituality, Spontaneity, Strength, Stability, Success, Status, Teamwork, Tolerance, Tradition, Truth, Vitality, Volunteering, Wealth, Wisdom.
• On a family member's death. My heart is sad and touches your grief as my grief too. Our family is blessed with many experiences of birth, life, and death. At each, we gather to sing a promise, a praise, and a memory. Each song is a prayer to each other and a whisper to God for His blessing. A touch of grief is God's whisper to spark memories of joy.

Psyc: Efficient Thinking

Efficient Thinking

Efficient generally refers to performance with the least amount of waste or sometimes the ability to avoid waste. The term efficient is very subjective to context and observations regarding use.  Two of the subjective measurements are the consumption of resources and the use of resources to meet a goal. Each are perceptions on the same consideration, one view is from the producer and the other from the customer.  Efficient thinking in mind and the brain is similar. The neurobiology of the brain produces thoughts, and the neurocognition of the mind consumes the thoughts.

Waste has some negative connotations, e.g. trash, but a wastebasket is very efficient for collecting trash. In production companies, the consumption of resources manufactures a product. In manufacturing, quality is an efficiency statement that appears to be a perception measurement about resource depilation that occurred to make the finished goods. Customers who purchase the goods make a quality assessment to buy based on their judgment the goods meet the perceived use of their personal resources,

Illumination is the waste of electric power applied to a light bulb. A 10 Watt light bulb is more efficient than 100 Watt light bulb regarding power consumption. However, from a different perspective, the illumination produced by 100 Watt bulb may be more efficient to reduce the darkness. In energy consumption,  watts is a measurement of the waste cost associated with the power to produce electricity. Energy company uses waste consumption to make money. The more waste, the more money

MS: Think Outside the Box

Think Outside the Box

HERO:

The word hero is an acronym that means, Help Everyone, Respect Others. You show respect by giving your time, your talent, your treasure, and most importantly, your tenacity. Never quit until we find the cure for MS. Thank you for coming, each of you is my hero.

The current dialog on MS has two principal author perspectives. The clinical view and the MSer self-view, or the "them" or the "me" perspective. When I talk about MS From the Insider-Out, I try to have the "us" perspective.  I just look at MS magazines, the principal authors were from the clinical view. Sometimes, the magazine will have an MSer personal story as the me-too story.  The them pronoun can be a logical context syllogism when referring to people with MS as the object of the article. Them, you, us and me are just perspectives of the MS box. The clinical views, them and you, see the MS box from the outside. The MSer views, us and me, is from inside looking to see out. The MS box does not have walls, rather, the clinical perspective is looking at a pool of water, and MSer perspective is living in the pool. The water is not water, it is MS.

The idea of "MS From the Inside-Out" is different than other dialogs. It is a cross between the clinical and the personal.  

Before MS forced me into disability, a big part of my career was working on international standards for electrical engineering. The job was to architect information models. Everybody is an information molder. Every profession has sets of information models that become the rules of the job. An MD diagnosis of illness. A CPA reconciles charts of accounts. Parents, children, artist, CEO, researcher, pastor, politician, gas station attendant, hermits, blue-collar, white-collar, gray-collar, everybody operates within tribe information models. Characteristics, personality, craft, relationships, and awareness emit from information models.  This email is an information model.

Think of “MS From the Inside-Out” as the middle-ground information architecture of MS life.

Here is a challenging information model question I asked many doctors and others, some of whom were at the meeting.

a. What not is fatigue is ___________?

b. What is not fatigue is ___________?

These are information architect style questions. 

The answer for a. is the opposite. 

The answer for b. is a description. 

My Inside-Out journey began with another question, “What did MS steal from me?” While looking for what MS stole, I discovered the MS thief left fatigue tracks. You may think everybody knows MS causes fatigue. That is true, the difference is my discovery personified MS as thief and fatigue is evidence not a symptom.

The challenge question makes a case statement where the fatigue evidence may find what the thief stole..

All the "pros" answered with descriptions of fatigue. Never the opposite.

A survey using the challenge questions. While not necessary, add one more question.

c. What is your connection to MS. Answer One or more.
___MSer.         How long since diagnosis? ______
___Care giver. How long providing care? __________
___ Medical doctor.
___ Ph.D. not medical.
___ Medical or Ph.D. staff
___ Therapy. What type? ________
___ Community Provider?  What type ________
___ Trainer. What type? _______
___ MS Support Organization.
___ Other connection. ___________
___ No connection.

As an experiment, read the InfoMS "Focusing on Fatigue"  to look for an answer to the challenge question.

I did find an answer. I am a fan of letting others seek their answers. My answer took me two years working on and off to find.

CPA Hint. What not is a net asset is ________
               What is not a net asset is  ________
               😀The answer is not a not for profit

The MS Society Communications Editor and some Society staff rejected MS From the Inside Out. Not everyone is in favor of a new MS box. 

A box has 4 observer perspectives. 

 - The outside perspective sees the box. 

 - The inside perspective sees the box. 

 - The outside-in perspective is a guess about what is on the inside. 

  - The inside-out perspective can see both sides. 

Hence, the expression, thinking outside box. Some people think MSers belong in a box. Open a box the lid to discover a music box.

In 1989, at 40, I was diagnosed with MS. I worked as an advisory engineer at IBM. Then in 1995, MS forced me to surrender my career. In 2005, I started to change my relationship with MS. The process took a few years, eventually, I invented a training program called Connection Toning. All of my MS education was a clinical perspective. (Most of the Brain Hearth  program was from the clinician perspective.) This perspective is absolutely necessary. As time passed, I realized as an MSer, I have a different perspective. I called my perspective, "MS From the Inside Out" and the clinical perspective, "MS From the Outside In."

However, both perspectives are about MS.  I needed a model that includes both. This blog explains:

https://ideas.resipso.com/2019/10/multiple-sclerosis-ms-from-inside-out.html

The Outside-In MS dialog is lesion, inflammation, and scar.  However, I know something is wrong before going to a neurologist. I gave that knowledge a name, irritation. I know the lesion will cause neuro-psych damage I called stigma.  I named the Inside-Out dialog lesion, irritation, and stigma.

https://ideas.resipso.com/2019/11/multiple-sclerosis-ms-attack-zones.html

Psyc: Tribal Bullying

DRAFT:


What are your opinions on bullying by tribes? As members of society we all live in tribes.

Tribe examples include family, work, church, city, sports teams, gangs, cliques, organizations, income, discrimination profiles, political parties, military, demographics, national pride, etc.

When my daughter was in middle school, the in-girls clique bullying was terrible.

When I was in grade school we lived on the wrong side of tracks and we were poor. The kids from the "the north side of Colfax" did name-calling, shoving, ridiculed, and ostracized my brother, my sisters, and me. We were not the only school kids who the bullies attacked. Colfax was a label of convenience, rather, in reflection, we were poor, but not in poverty. I suspect other branding like patched clothes,  paper bags not lunch boxes, heritage, grammar, size, clicks, and family advertised labels for bully aggression. I remind myself, the sins of youth are not the sins of adults. Years later, after meeting the bullies from my youth, they had none of that character. 

Tribes have four actions, recruit, inclusion, exclusion, and expelling.

Tribe behavior includes identity, defense, ranks, sustainability, contribution, commitment, boundaries, dues, events, charter, fraternity, and attraction.

During a person's lifetime, the person will be a member of many tribes. Tribe membership can come and go, rise and fall, persist or fail. Membership changes are fundamental to the tempo of life and death. From the time of birth, we build membership in the tribe of self. When I die, I will be a member of a US veteran's gravesite. 

Bullying is the use of force, coercion, or threat, to abuse, aggressively dominate or intimidate. The bully's behavior often repeats and becomes habitual.

Questions:

Besides mobbing, what are the other profiles for tribal bullying?

What is the self-defense for tribal bully attacks?

Dirty Doubles Stud Poker

Feature: Dirty Doubles Stud Poker 

In 1998, when a few of us got together is to play nickel, dime, quarter poker, I invented the dirty doubles poker game. Many card games use partners as part of the gameplay. 5 card stud poker intrigued me as an oppunitity to devise a partner type game for poker. 

Dirty Doubles is a stud poker game in which each player has the possibility to gamble with 6 up cards in a hand 1-6-1. The deal remains 1-3-1, but by random selection each player has a partner where both partners share the other partner’s up cards. Each betting player can use a combination from 5, 6, 7, or 8 cards to make a 5-card poker hand. The hand should be played with and even number of players, preferably 6, however, a variation can be played with an odd number of players.

The Game:

Each player has a partner. The stud up cards are shared between each partner in thus increasing the possible winning hand combinations. For example, in 1-3-1 five-card stud, the partners each have 2 down cards and share the 6 up cards to develop a winning hand. Betting intensity draws more commitment to remain in the hand.

 Table terms:

·   Mud is the name for the 6 up cards.

·   Dirt is the name for the partner’s 3 up cards.

·   Prospect is the name for the player’s 2 down cards.

·   Water is the money in the bet pot.

·   Slush is the alphabet suit rank, clubs (lowest), diamonds, hearts, spades.

Strategy:

Gameplay follows traditional betting and order of play. The betting deal is one card down, three up, one down (1-3-1). All players see all the up cards. Each partner’s betting tactics are as an individual player.

Order of play:

The first deal is non-betting and determines partners. On the first deal, the dealer in left to right order, deals each player an up card. 

·         When any two players have a pair, those players are the dirty partners.

·       This continues in rotation until each player has a partner.

·         When all players have a partner, the deal stops.

·         The dealer collects the cards, shuffles, and deals as any stud game.

·         Deal, play, betting protocol, and raises proceed as any 5 card stud game.

Because six cards are face-up, five up cards may be a rank order pat hand. However, each player still has two prospects down cards to improve the pat hand. The prospect cards may improve the rank order. If the rank order remains the same, prospect cards may use the suit rank to substitute for a rank card. The suite order is alphabet order, clubs (lowest), diamonds, hearts, spades (highest). If the pat hand stands the final call, the players split the pot.

However, the partners continue to play until the last call requests all players to show their hands. If the partners with a pat hand defend against other players, the winning partner is the one with the winning 5 card hand.  If the other players fold, the partners bet and play against each other. Both partner’s up cards contribute to a winning hand. Every game has one winner. The better must declare the play’s 5 cards from the two down cards two and six up. Cards do not self-declare.

Dirty play happens when one of the partners decides to fold, then the other partner my choose to play or fold the up cards. If a partner chooses to play the folded hand, the player partner must match all checks and bets to folded hand just as if the folded player hand was still in the game. Normally, raises are not allowed on the folded player’s cards. Before the first deal, the dealer may announce dirty raises allowed.

Number of players:

Odd: When an odd number of players wish to play dirty doubles, the seat to the right of the dealer is the odd player hand called the slop player. The dealer passes out the partner's hand just as if a person was sitting in the chair. When a player pairs with the odd hand, the partner may choose to play just like a folded hand where checks, bets, and raises would be played by a real players.

Only 2: When 2 players wish to play dirty doubles,

The challenge:

Dirty doubles increase game intensity by distributing winning hand, prospect combinations increases pot growth and raises player psychology attention. Since the first deal determines partner section and dirty double card play position order, traditional stud betting tactics dynamics change due to up card locations.

Dirty Doubles introduces the concept of prospect bidding. Normal poker odds are a frequency based on a deck of 52 cards with four suits of the same 13 values. In dirty doubles, the deck size for a poker hand increases by 3 times the number of players. A game of six players is a 70  poker deck where  3 times 6 plus 52  is in play 70 cards. While the dirt cards are from the same standard deck, the dirt’s suit and face values are essentially random arbitrary hand fulling opportunities*. 

Nasty dirty doubles:

Normal dirty doubles play is with the stud up cards. Nasty dirty doubles in 1-3-1 stud allows the betting partner to play the last down card from the other partner’s hand. The last down card stays down and unknown to the betting partner.  All payers may look at their 5^th card. Before the 5^th card bets, the betting partner may declare his down card as nasty and chose to risk play using the partner’s unknown 5^th  card. The other partner’s hand becomes the moral hand.  The betting partner uses hid 1-3 cards and the moral hand’s 3 up card and the down card. The moral hand down card stays unknown to the betting partner until the game’s last call.  When players declare their poker hand, the betting partner declares using the last four cards from the moral hand and the first four cards from the nasty hand. The moral hand down card may or may not be in the declared poker hand.

*Random as cards dealt in play rotation (horizontal), arbitrary as a dirt set (vertical) in the mud.

 [JF1]

Veteran: First Principles of Veteran Benefits

Veteran: First Principles of Veteran Benefits

Anytime an area of interest transforms into another area of interest, the process of transformation requires three steps. The first step is accepting the original area of interest, the last step is generating the intended area of interest. In between are the transformation rules. The rules act as a catalyst where the meaning of the original can become intended. The process of information transformation happens everywhere.

As you read these words, the eyes scan the symbols and transform the words into thought. In between are the multiple transforms where each transformation rules contribute to the eventual intended area of interest. In arithmetic, the predicates, add, subtract, equal are the rules for transforming numerical values. First-principles is another name for the intermediate rules. Each principle is a valid test for both the original and the intended area of interest.   

For veterans' benefits, the Law is the original area of interest with the statutes contained in US Code Title 38, Veterans' Benefits.  In most cases, the intended area of interest is the Title 38 Code of Federal Regulations Veterans' Benefit used to define the business practices of the  Department of Veteran Affairs (VA).  Title 38 also establishes the United States Court of Appeals for Veterans Claims (CAVC) with statues from 38 U.S.C.  7251–7299. The Department of Veteran Affairs operates as an Executive Department of the United States President.  The Court of Appeals for Veterans Claims operates as a Federal Court, not as part of the VA.

The CAVC charter is Title 38 Statues. The Count has intermediate rules that are the principle to transform the Statues into the Count's judicial practices. The VA creates the regulations without intermediate rules where the regulation is in the VA's business interest  Therefore, the regulation may not be in the veteran's interest.  

The First Principles (or Rules)

This is my proposed list of the missing first principles. The list begins with the missing definition for Title 38.  

1. Title 38 USC Veterans' Benefits is Congress's lifetime wellness grant of benefits to each honorably discharged veteran for the veteran's national service with the Department of Defense. 
2. Title 38 statutes define the grant's services.
3. Congress allocates funds from the Federal Budget to pay the fees for the services.
4. A veteran's benefit is the paid fee for a Title 38 service.
5. By Law, the veteran owns all benefits.
6. The DVA and the Court of Appeals for Veterans Claims are Title 38 services.
7. Veteran disability compensation is a Title 38 service.
8. The DVA is an agent of Congress to administer the Budget's allocation and to provide Title 38 services.
9. Title 38 is a set of business rules for Title 38 payouts.
10. Once a veteran always a veteran.
11. To receive Title 38 services, the veteran must register as a client with DVA.
12. The DVA is not a veteran, therefore the DVA cannot own benefits. 
13. The DVA is an agency, not a club, veterans are clients, not members.
14. In all agreements between the veteran and the DVA, the veteran is always the first party principal. 
15. For veteran's medical treatments at a community provider, the DVA establishes an expressed agency with the provider thereby the medical expense is the same as if the treatment occurred at a DVA facility. 
16. A medical expense is a fee for medical service.
17. A treatment for an episode-of-care may include one or more medical expenses. Medical trauma may include one or more episodes-of-care. 
18. The purpose of insurance is to reduce the insured liability. The payout from the insurer is the insured's property.
19. An insurance company may act as the insured's agent to make claim payments. The payment is exactly the same as if the insured paid the claim.
20. The Goodwill Grant is the veteran's volunteered permission given to the DVA to used the veteran's private insurance for cost recovery at a DVA faculty. The grant permits the DVA to be a principal to make cost recovery claims with the insurer. 
21. The DVA has a fiduciary trust responsibility to use the Goodwill Grant's private information only within the DVA and not with any DVA's agents. 
22. The DVA may assist Congress in determining a veteran's eligibility for a particular service, once eligible, the DVA cannot deny the service as a veteran's benefit.
23. All veterans at the time of active duty discharge are eligible for Title 38 benefits and may register with the DVA for Title 38 services.
24. The DVA cannot deny an honorably discharged as a client.
25. The veteran has the responsibility to use Title 38 services for the veteran's wellness.      

The First Test of a Regulation

For a regulation to be valid, the regulation must pass the Title's wellness test (Rule 1).

Does the regulation provide for the wellness of the veteran?

If the regulation does not pass the test, the regulation fails the purpose of Title 38 and therefore the regulation does is not comply with the Law. While the DVA is a business operation, the DVA must conduct its operations as an agent of Congress. Rule 1 states the purpose of Title 38 is to provide services for veteran's wellness. Rule 1 applies to the DVA. 


                                    

About Me: My Multiple Sclerosis Story

About Me: My MS Story

My name is Joseph. In 1989, I was diagnosed with multiple sclerosis. Since then, my MSer story has traveled many roads. Today, I will share the story of some of my adventures. I want to thank each of you for being here. Whenever we can come together to hear and discuss MS, I believe each of us receives energy to continue the adventure. 

Almost every story has a hero. My story has many. I was born in a small town in central Nebraska. We lived on the old family homestead farm without indoor plumbing or running water; three years later, when we moved to the big house, my mother told my dad she wanted an indoor toilet and water in the house. I can still see dad’s solution: a 50-gallon drum on the roof with a hose piping water from the well and electric cord attached to the stock tank heater keeping the drum’s water from freezing. By the time I was seven, I had three sisters and a brother, and we left the farm and moved to Denver. 

Life with MS is like farming; praying each year that the crops don’t fail, yet knowing it’s going to happen sooner or later.

I remember my grandfather, who was one of my first heroes, telling me, “Joseph, I had a great life. Farming is hard. We struggled through the Depression. We have a great family. I started with my dad’s horse to plow fields. We bought land, tractors, and cars. We replaced oil lamps with light bulbs. We went from listening to the radio to watching television. I got to see a man walk on the moon!” Just as he was a farmer, he planted that memory in me. Personally, when I am older and my daughter is grown, maybe I will have a grandchild who I can tell, “I had a great life. I received the cure for multiple sclerosis!” 

In 1968 at 18, I enlisted in the Marine Corps, which began my career working on computer-based Tactical Data Systems. I loved the technology, and I was never bored because there was always something to learn. In 45 years of working with computers, I experienced many changes first hand. The early computer programs were modified by re-wiring circuits, then machine-level switches, hole punch cards, monitors, mainframes, PC, PDA, cell, and so many other great inventions that changed our lives. MS cut that journey short.

Everyone with MS remembers their first relapse and the scared feelings after the diagnosis—“You have MS.” For me, those words came in 1989, while I was living in New York. When I was still single, after a long business trip to Japan, I was happy to be home, but also very tired. I was going down to the basement where I kept my office, and I slipped and rolled down the stairs. I lay there for 30 hours, thinking I’d broken my back, and then somehow found the strength to get up to drive myself to the emergency room. To this day, I have no idea why I didn’t call an ambulance. I’ve since learned that it’s okay to ask for help.

While I was in the hospital, the doctor told me X-rays showed a lesion on my spine at the back of my neck that looked like cancer. I was still in pain and the doctor’s words didn’t register. Meanwhile, my left hand was numb, and my arm was curled to my chest, frozen, unable to move. The doctors recommended surgery, saying the paralysis would kill me. Tests done the night before showed the lesion was shrinking and they decided not to operate. After days of testing and no clear diagnosis, incredibly, I was sent home under the care of my neurologist. 

Three months later, I was stumbling and dragging my left foot. An MRI showed new scarring in the brain and my neurologist confirmed the diagnosis — multiple sclerosis. When I was first diagnosed, some people would shun me, not come into my office, walk out of meetings, or not shake my hand. I remember well those first days of being shunned. I didn’t blame them. At the time, truthfully, I didn’t know any better myself. MS is something to fear, but it is also something to understand. 

Every MSer I have talked to has experienced some denial. My father showed me the courage and my mother cured my denial. One day while shopping for new shoes the numbness in my fingers made it difficult to tie the laces. Mom saw me struggling and noticed a clerk some feet away. In a clear, distinct voice said, “My son has MS, he needs help getting these shoes on.” Mom did not know it. But, my mother's love cured my denial with a few simple words. 

In 1993, I began taking a disease-modifying drug to help control my disease by reducing the frequency of relapses. But by 1994, I was no longer able to work. On December 8, 1994, the doctor told me I had no choice but to retire or be confined to a wheelchair. As I was walking out the door, I had to hold on to the wall to stop me from falling. I was in shock. I cursed, “Damn it MS! You stole my career. You stole my life.” The walk to my car took forever. January 1, 1995, was not a happy New Year.

The next month, I met Debra, the woman who would become my wife. She refused to give up on me, and two years later, we were married. From the moment we met, she became my hero. I also say, she became my “Happy Heart.” I went from age 46 to 16—I would leave love notes on her car and sign them with a heart that had a smiley face inside. One day, she asked me what that was and I said, “Well, that’s my happy heart.” 

My wife and I had been married for seven years, and my daughter was about five. At that time, I had numbness throughout my left side, and I used a cane in my right hand to help me walk. One day, my wife said, “Joseph, you don’t hold my hand anymore while we’re walking.” I started analyzing what she said, and I answered as an engineer, “Well, I don’t get any charge out of it.” She was hurt, and said, “I can’t believe you just said that to me.” I was surprised, too. Several months later we went to the Can-Do program at the Jimmie Heuga Center in Vail. We were listening to a lecture, not specifically on this topic, but we both had a revelation and realized a truth about MS numbness. One of the reasons for holding hands is that it feels good. Because my hand was numb, the emotional mental impulse to reach out and hold her hand got lost because of the MS. I realized it was numbness and had nothing to do with my love for my wife. We’ve worked around it…sometimes we’ll be walking and she’ll bump me and I know what that means. It elevates my awareness.

After 19 years of living with MS, my physical condition had become very stressful. I was putting on weight. Walking was fearful. After my first relapse, I walked almost everywhere with a cane. By 2008, at times, a second cane was close at hand. The situation was worsening. My excuse was MS. My daughter was getting older and my wife was taking on more responsibility. I started to change my thinking, creating a desire to overcome my lack of mobility. What followed were days, then months, and then years of personal training. I have biked five MS 150s, and two 400 mile multi-day treks, and broken both my arms. 

In 2013, I started to lose the feeling in my right foot, making it difficult to slip my feet into the bike pedals. My normal way of getting on the bicycle was to lay it down, stand on my “MS” leg, and swing my good leg over. And then stand the bike up. But this relapse made it impossible for me to do that, and that was my second worse day with MS. All that training, all that work, all those perfect miles: Gone.

After two weeks, with treatment, I noticed gradual improvement; however, the damage was done by that relapse still kept me from cycling. I still look at my bikes. I look out the picture window, look at the mountains, and watch great riding days pass, determined to someday ride again. 

Our journey with MS is mapped by relapses and remissions. With the modern treatments for relapses, the personal challenge is to stay in remission. Each day of remission is a chapter in a hero's journey. I’ve learned that one of the hardest things to overcome is myself; but I’ve also come to realize that I, too, am a hero on a journey. Every person with MS lives their own hero’s journey. The day you hear the words, “You have MS” the story began. Along the way, we meet mentors, support partners, treatments, remissions, and the disease. Because we adapt, the journey continues. MS is just an excuse for an adventure. 

For me, the word “hero” stands for “Helping Everyone Respect Others.”  Remembering how I was once shunned, I educate others that MS may be something to be afraid of—but it’s also something to understand. You can be your own hero by being proactive, discover, learn and know all your options for your MSer life. I’m grateful to my wife and my daughter, and to all the heroes I’ve met along the way. And, each of you—you are all my hero, too. 

Multiple Sclerosis: MS fatigue is an MSer's best friend

MS fatigue is an MSer's best friend.

Connecting to fatigue is one of the hardest MSer challenges. Often without warning, MS fatigue invades activities. Even with life skill management and avoidance techniques, the fatigue monster can find a way to hack into any activity.  This interloper action provides many reasons to consider the fatigue invader an enemy. In systems design, anything that causes a breach in system security is an interloper. As good as any system can possibly be, an interloper demonstrates an opportunity for improving security. An interloper that penetrates enough to cause damage means recovery actions.  While the interloper attack is cursed, the attack triggers opportunities to make a better system by improving security and recovery plans.

MS fatigue is an interloper attack on our body’s systems. We curse its existence as an enemy to our health. But if we step back and look a the attack as defining a breached area in the bran due to the MS lesions. The fatigue points to a place where adaptive techniques can aid damage recovery. As an MSer we can acknowledge MS fatigue as a foe, but also, we accept fatigue as a friend because it is showing us where we can adapt.

MS fatigue is an MSer's best friend.

MS-induced fatigue is the only true impact maker for lesions.  MRI shows where a lesion occurred. Neurologist tests are clinical fatigue tests. 

MS lesions result in 3 types of axon damage, nerve fiber fatigue, axon loss and ephaptic conduction* or simply high impedance opens and shorts.  Each of these exhibit as MS fatigue. *ephaptic conduction, as in cable theory,  means crosstalk due to loss of myelin via electrical fields.

The single measurement instrument of MS fatigue is the MSer themselves.   The body's built-in instrumentation is the main reason MS fatigue is the MSer's friend.  The life skill is to recognize friends and foe. I know first hand how easy it is to make MS fatigue the foe. Whereas in reality, your friend is telling you where the danger exists. 

The "walk out the door" example uses perceived exertion as the instrument to find the lesion trauma area. 

Imagine yourself sitting in a chair, looking at the morning sky out the door.  You decide to go outside to experience the day. To walk out the door 3 conditions must exist. First, you must have the physical prowess to stand up, next you need the neurological coordination to walk, and third, you must have the cognitive resources to plan the walk. ( Some people may lack the mobility to actually get up and walk, but still, imagine you can.) The example is a way the identity the source of fatigue. 

Physical prowess examples are body system works for strength, flexibility, and endurance. Physical fatigue exhibits as things like sweating, thirst, breathing, stiffness, strain, relaxing, nourishment, and sleep.

Neurological coordination is messaging  between the CNS and the PNS  nervous system

Cognition is the analytical mind that plans and executes activity. 

Bicycle: Propel Adaptive Cycling Pedal

Propel Adaptive Cycling Pedal

I have multiple sclerosis. The disease inflicts neurological trauma and causes nerve-muscule fatigue. An MS attack will limit nerve conduction and in turn, limit muscle to-from engagement.  Nerve fiber conduction has the same four conduction conditions, normal, resistive, open, and shorts as wired circuits.  Open and shorted nerve fibers can exhibit a permanent disability. However, the brian's neuroplasticity can develop adaptive circuits. The Propel pedal began as an adaptive device as a workaround for my MS disability challenges to pedal the trike.  However, the research and development to make the adaptive pedal discovered a new pedaling performance and methodology for all cyclists. 

I am a USMC veteran, 68-71.  When an MS release prevented me from doing an upright bike mount, I petitioned the VA's Adaptive Sports Program for a recumbent trike. Before the VA would approve the trike purchase, I had to prove I could ride the trike. A bicycle pedal is the only device that makes a bicycle a bicycle. A rider may have may many challenges, but without a pedal, no rider could prove an ability to ride the trike. 

After years of upright riding using clip-in and platform pedals, I was a little surprised to learn recumbent bikes used the same pedals, clip-in and platform, as upright riders.  Clip-in shoes worked both ways, but platforms took a lot more energy to keep the shoe connected to the pedal 

The probran allowed for 8 test rides to select the recumbent and  prove  I could ride. In the test rides for acquiring a recumbent trike, I tried many different pedal styles. All failed designs for valid reasons. Safety was the most common. As a result of the tests, a new pedal design emerged. With the help of many people, the ideas became the Propel Adaptive Deck Pedal.

While the initial concept came from my desire to ride the trike, during my 31 years with MS, many mobility machines, exercise devices, and therapy equipment use cage-like variations of footrests. The cage can be a safety hazard. Propel's user safety model has three dimensions, mount, travel, and dismount. Within each dimension are multiple design extents. And each extent addresses one or more problems.

The drawing shows the Propel's general design concepts. When traveling, the locomotion power transfer to the trike is by the foot pushing the pedal's axle. During the pedal stroke cycle, several factors affect the efficiency of power transfer. Throughout the pedal stroke cycle, the fulcrum for the body's power transfer is the axle. As the stroke rotates, the foot's position over the axle changes leverage, therefore the leverage change affects power transfer. The two main factors affecting leverage is the position of the foot over the axle and the foot's movement on the axle. 

Traditional bicycle pedals place the forefoot (the ball) over the axle. Propel riders use centric foot placement where the foots' arch is centered over the axle. The foot's movement on the axle is similar to an airplane's pitch, yaw, and role. Airplane power is either acceleration or drift. The five factors, pitch, yaw, roll, acceleration, and drift combine as trim to indicate the efficient use of power. Propel's design assists the rider with keeping the foot and pedal in trim for the entire pedal cycle. Forefoot pedaling is like an airplane's center of gravity being in the cockpit with the pilot, whereas centric pedaling is like the plane's center of gravity near the wings. Propels centric pedaling allows the stroke trim to occur as if the axle's position is similar to an airplane's rotation around its wings.

Bicycle: Denver Post Newspaper Boy

Denver Post Newspaper Boy

Joseph Flanigan, Loveland, Colorado. September 2016

Sometimes when I am cycling, I think about 1961, I was 11 years old, and the two years I delivered The Denver Post newspaper near our home in Aurora, Colorado. I remember Mr. Colten, the Denver Post paperboy manager, and my job of delivering the Denver Post every day. Every afternoon and Sunday morning to pick up the papers, for my route,  I would ride my bike about a mile and a half to a converted garage called the newspaper shack. Inside, attached to the walls, were folding benches. The Denver Post truck would drop bundles of papers off at the newspaper shack where the boys would unbundle and count out the number of papers for their routes. Carrying the stack, they would go to their assigned folding bench, fold, rubber band and load the papers into the bike bags. Often there was a race to see who was fastest. Once loaded, each boy road to their route. A good route was 50 papers. Canvas bags wrapped around the extra-wide handlebars. The bags were the same as the over the head shoulder bags the walking paperboy's bags where one bag hung in the front and one bag hung in the back. When Mr. Colten gave a new boy his bags, the other boys helped to cut one shoulder strap in half. The bags draped over the handlebars, one bag hung on each side of the front wheel.  Ends of the cut strap attached to the handlebar end with a hose clamp to keep the canvas tight to the bar.  The last step was to wrap bags around the handlebar ready to be unwrapped and filled with the day's newspaper.

Delivering papers was just part of the job. We would solicit subscriptions from people moving into our routes, watch for people moving out and do monthly door to door collections -hoping for a small tip. That was tough work but it did not seem so hard at the time. If the weather was rain, snow, hot or clear, every day the paper had to be delivered. There were no days off. When our family went on vacation, I would have to trade days with another boy in exchange for doing each other's routes  On those days, to do both routes, it meant two loads and two trips to the newspaper shack. Helping each other out by riding a double route was just part of being a newspaper boy.

The bikes were heavy, and the bags hang off the handlebars full of newspapers made the bikes heavier and unstable. The bikes always needed some repair, flat tires, new tires, bent wheels. We had to learn to be our own bike mechanic. Of course, any repair cost came out of our part of the collections. In the winter, hats, gloves, coats and boots had to be in good repair. The first year I rode was on a  bike Dad got from another news paperboy. The bike was well used, but I delivered papers with it for a year and saved my money to buy a new Schwinn.

Sometimes on Sunday morning, if it was snowing, Dad would take the 55 Chevy station wagon and drive me to the newspaper shack. I would fold and rubber band each paper and load the papers in the back of the wagon. After arriving at the route and dropping the tailgate, sometimes sitting, I could throw the paper and hit the porch.  But, because of the snow, I would grab an armful of papers and run zigzag down the street, making sure the papers would be dry. Sometimes the paper would have to be put behind the screen door. Dad was pretty good about helping me, but I can still hear Mom saying, "Harry, you have to help Joseph with the papers this morning or we will be late for mass."

When I mentioned being a newspaper boy did not seem like hard work, most likely that notion came from being on a farm until I was 7, before we moved to Denver. We still had family on farms, and visits always included chores. I remember my father and my uncle milking cows. My grandfather out in the field plowing or mowing. Grandma took care of the house, cooked and raised chickens. Everybody make sure the animals had care, water, and feed. Twice a day, every day the cows had to be brought in from the pasture, feed and milked. Riding a bicycle was fun. However, doing the paperboy work was riding just part of the chores. Our family was poor, but we knew how to work. Mom took care of us five kids. Often Dad had two jobs, sometimes 3. He was good at painting houses. During the day, Dad worked as a janitor, and at night he painted houses for realtors. Many nights after paper delivery, Dad would say “Grab some supper, I need help painting.” Of course, I knew what he meant. While dad painted, I did the sweeping, hauling trash, scrubbing, pulling tarps, moving ladders, cleaning brushes. That is just the way it was, complaints were meaningless and got in the way of getting the job done.

Labor Day, Monday, September 2, 1963 was my last paperboy ride. The following Tuesday, my brother Pat became a news paperboy.

When I talk to pro bicycle racers, I can look them straight in the face and claim I was a pro cyclist at 11. Every day, in all kinds of weather, we road for money, delivering papers in a timed race.

In 1954 we still lived on our farm in Nebraska. The house sat about a quarter-mile off the gravel country road. The driveway to the house was a dirt road. May 12th was my 5th birthday. I never expected much for presents. About mid-morning Mom and Dad walked me out the front door. Sitting in the driveway was the most beautiful site – a red bicycle with white training wheels.  Before long, I could ride that bike all over the farm. But, never ever on the county road. In 1956, we moved to Denver. The red bicycle sold at the farm auction.

After my newspaper boy days, I went on to motorcycles and cars. Forty-six years later and 19 years of living with MS once again, bicycles came into my life. The first ride was 10 feet before falling. Getting back up, then it was 30 feet. And again, a little more each time. My memory recalled that red bicycle and all those newspaper boy days. Eventually, confidence recalled the riding skill that was never lost.

Damn It: Shingles, Postherpetic Neuralgia, Apathy and Grit

Shingles Then Postherpetic Neuralgia (PHN) Then Apathy Then Grit

Shingles and Postherpetic Neuralgia

Selfie Picture

On April 7, 2017,  shingles broke out on the upper left side of my face. In about 2 weeks, the shingles pox left, but I spent the next 6 months in bed from postherpetic neuralgia (PHN) pain on the V1 of the trigeminal nerve on the upper left side of my face. The pain from itching was so bad I could not walk.  After more than two years, and the itching persists, but it is not as debilitating. The first PHN drug treatment was gabapentin. It did not work. Ice packs helped. I am glad I am a veteran, and my VA neurologist is a serious doctor.  He switched gabapentin to the drug to Lyrica, and that provided more relief, at least I stopped screaming.

I started wearing Lidocaine patches on my forehead.  I made my own concoction of Lidocaine, CBD and THC lotions to replace the patches. I read about some experiments using Botox injections for the PHN treatment. I have Medicare and my IBM retiree insurance, and the VA Cheyenne is over an hour away, so I try to use community providers.  My community neurologist, Dr. Tamara Miller runs the Multiple Sclerosis Center of the Rockies.  She used to give me Botox for a perpetual MS spasm in my left calf. The FDA approves Botox for migraines but not for PHN.  My VA neurologist, Dr. Kanter found a way to make an exception. Every 90 days, the VA ophthalmologist trained in Botox injection can give me about 13 Botox injections on the trigeminal nerve. 

In the days before the Botox treatment, I laid in bed, hour after hour, day after day, month after month. For the first time in 68 years, I became apathetic. And my mood kept getting worse. The bad news was during those days, I did not know I was apathetic. All I could think about was the constant itching pain. One day, I got sick of being sick.  Treatments sparked me just enough that I knew my attitude and mood did not belong to me.  Eventually, I did diagnose myself as apathetic. Before I did, I remember looking in a mirror at my shabby self and telling myself, “You are pathetic. You look like you do not give a shit,” I suppose telling yourself bad news about yourself can be the first step to change.

It is now November 2019, the itch is always there, like a bunch of small mosquito bites that have just about lost the itch. There are flare-ups, and the treatment is back to ice packs, patches, and lotions, The flare-ups begin about two weeks before the next Botox injection. After the Botox shots, it takes about a week before the Botox is effective. Even with the Botox, stress and weather can provoke itching again.

 I do not know if the PHN will ever go away, but life with MS and knowing MS is a lifelong medical condition did prepare me for the PHN. The pain-treatment pattern is the same. Itching is like an MS relapse alerting me to the fact that something is wrong. Steroid treatments help to put MS into remission. Likewise, icepacks and patches help to put the PHN itch into remission. With MS we take disease-modifying treatments to help reduce relapses. And with PHN, the Botox treatment helps to reduce the itching pain. 

Both MS and PHN cause fatigue. Both drain vitality and can damage the will to thrive.

Apathy and Grit

I am not exactly sure how I diagnosed myself to have clinical apathy. Ordinary, everyday apathetic feelings are normal. We have an internal judgment referee that enables us to show or feel no interest, enthusiasm, or concern for something.