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. 

Veteran: Veterans Day Speech at Loveland High

Veterans Day Speech at Loveland High

Corporal Joseph Flanigan

Marine Corps

January 1968-January 1971

San Diego, California

Veteran’s Day Speech, November 11, 2014.

In 1967, when I graduated high school, I wanted to be a nuclear physicist. I just thought it would be amazing to study the insides of atoms. Well, it was Vietnam time, and the draft enlisted youth to the military as soldiers. In college, I soon realized I needed more money for tuition, and I volunteered for the draft to get 3 years of college for 2 years of service using veteran’s benefits. While in boot camp, I learned the first of many Marine ideals, like, “Once a Marine, always a Marine.”

On November 10, 1775, the Second Continental Congress passed a resolution staring the Marine Corps. From that date, every Marine is trained in combat to defend our United States. As I was to learn, for every Marine on the front line, there are many jobs Marines do to support missions. 

Yesterday was our 239^th birthday. 

While in boot camp, you hear the drill instructors shouting. “In my Marine Corps, we do 100 push-ups before chow!” “In my Marine Corps, we don’t walk, we run!” “In my Marine Corps, we crawl on our belly to rest!” And you think to yourself, this guy is insane, always saying “In my Marine Corps” before every challenge and command.

While in bootcamp, you take lots of tests that will determine your job in the service. My results came. “Private Flanigan, you have been selected for a new job. Something called computers. I didn’t know anything about it. You don’t have to take the job. If you don’t, you will be shipping out for Vietnam.” At 18, I just made of the smartest life decisions, “Sir, I accept.” That decision began my 45-year career in computer science.

Boot camp graduation, the drill instructor hand you the Maine Corps Eagle, Anchor, Globe emblem, shakes your hand and says “Welcome to my Marine Corps” And then you understand.

For the next year, I went to a special Marine Corps school, completing 4 years of college courses in 48 weeks. I still remember the first day of class, and the first words of the instructor, “How high can you count on your fingers?” By then, I already knew in the Marine Corps, the easy answer was always wrong. After instructed listened a few wrong answers, he announced: “In this class, you will learn to count.” I learned to count, many did not.

We were to training on Tactical Data Systems. This was the first generation of computer-assisted flight and ground weapons. From the ground system, officer flight controllers commanded combat missions on military targets using data from radar, missiles, aircraft, and other armaments. Even though I was trained at the highest level, I was a Marine and could be transferred with the systems into combat. The Marine Corps changed my dream of looking into the physics of atoms to using atoms of electricity.

My duty was in Garden Grove, California,  testing and preparing new systems for deployment. We worked long hours in 6 foot cubes chasing computer circuits. To change a programs in second generation computers, technicians rewired circuits. 

Occasionally we would be assigned special duty. Marines who died in Vietnam would return to the states at the El Toro Marine Airbase. Today, I can still see the coffins being unloaded from giant cargo planes. Standing in company formation, stone silent, we watched, and said silent prayers.

When a Marine leaves active duty, we honor each other, no longer officers or private, just Marine. In greeting other Marines, we say, our motto, “Semper Fi”, forever faithful.

Contonix: Fitness Model Primary Elements

Fitness Model Primary Elements

The Fitness Model shows the body's connection relationship of physical, neurological and cognitive. If are sitting in a chair and you want to walk out the door across the room, three activities must happen.

•    Must have the physical prowess to move.
•    Must have neurological coordination of movements
•    Must have cognitive plans to direct movement.

Movement activity requires millions of body system's connections. Movement performance requires different systems to work in harmony with each other. Tone exists wherever the connections among the different movement elements perform in harmony. 

When connection tone 

• does not exist - a new skill
• or are weak - not used 
• or broken - due to trauma like an accident, illness or diseases like multiple sclerosis

then connection toning (contonix) training uses the connection relationship to remodel the connections. Mind-It is the training technique means to remodel. The Mind-It goal is to create or restore vigor.

Contonix: Connection Toning Elements

Connection Toning Elements

The Finite Elements of Conditioning