Harsh Realities of the Inconsequential Ramblings of a Condemned Man

* There is nothing on the market today with the ability to cure my multiple sclerosis or send it into remission.

* It is debatable whether or not my current medications are slowing the progression of my MS, giving me an extra year when, before, I only had a month.

* There is no known way to recover function I have lost, or will lose, due to the damaging effects of my MS.

* There is no way to predict, identify, or isolate early-onset MS, and eradicate the disease before it affects the next generation.

Not yet…

Overcoming those realities are my dreams; the only possibilities for realization come in the form of research and development. Your financial support is needed if I am going to win this fight.

Because it is a fight. The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Please support our fight.

main.nationalmssociety.org/goto/EMBK

This is my pitch to support our fight and share our message as far as your networks will take it.

I first shared my beloved message of dedication and hope on April 30, 2008. At the time, I had no idea the impact, of those words and my worsening condition, would bring me to where I am today; but, where is that?

Am I on the launchpad or the brink? I hope the answer is the former.

‘Pray for the best, expect the worst, be prepared for both.’

Over the past three weeks, I have shared my soul (or showed my ass) in ways like never before. I wondered if I went too far when Brie reacted to things she never knew about me. If I’m going to ask for support, you need to understand why.

If I’m going to ask others to give what they can, I must demonstrate how I am giving everything I have.

“You have five minutes to win their hearts.

And, GO!”

Here I just a smidgen of examples in my life.

If my MS is going to cripple me, it will have to put up a fight

I spend 2 to 4 hours a day in physical therapy, pushing my body to its limits. Most days, I fall short of what I could do in the past. Yesterday, I showed improvement in my strength and endurance. I hope to match that goal today. Baby steps…

It’s not all bad; I do spend a lot of time on elliptical machines and stationary bikes; that gives me time to binge watch a multitude of TV series. By the end of next week, I will be free to converse with anyone interested in Season 5 of The Arrow! [Line forms here]

I will continue to adapt and overcome

There it more than one way to skin a cat, so to say.

When MS turned my childlike scribbling into completely illegible scratch, I started to type everything. As my ability type on a keyboard diminished, I transitioned to voice-to-text software. Every blog post I “write” and every novel/book I am currently “writing” is, more accurately, “The Spoken Word of KB.” [I expect a lecture from my priest for such blasphemy.]

I will demonstrate my tenacity and conviction in searching for a cure

I’m on approved medication #9 and trial medication #2, part of the continued search for the right combinations. I don’t know when #10 or #3 will arrive.

I will continue to serve my community

…as a member of the Board of Directors of the National MS Society, Oregon Chapter.

…as a Sunday School teacher for St. John the Baptist Episcopal Church.

…as the Treasurer/Director for The West Point Society of Oregon (alumni organization).

…as a team captain for Team Amulet, 2017 Bike MS.

…as a loving father, husband, dog owner, and the K in EMBK!

…as a loving family member, neighbor, and friend.

As needed, I will do more

My effort to drive support led to the founding of NEVER STOP NEVER QUIT, a nonprofit organization solely dedicated to augmenting existing efforts to fight MS.

The mission of NEVER STOP NEVER QUIT is to raise funds, support treatment, and promote awareness in the fight against multiple sclerosis.

Regardless of the fundraising efforts, 100% of the net revenue generated by NEVER STOP NEVER QUIT shall support larger/national organizations, with the specific intent of finding a cure for, and managing the devastating effects of, multiple sclerosis.

There is much more to come with this adventure.

And, I will do more

Be it speaking at national/regional events, publishing books, or selling motivational swag, a mountain of efforts are underway to continue raising awareness and funds in our fight.

I will share my story for the world

Remember, you are not alone.

I have so much more to say, so many more inconsequential ramblings.

* I am trying to figure out where some fit: what is the best way to categorize the effect of worsening edema?

* I don’t have personal experience with others. Unfortunately, I will.

* Others are not mine alone to share alone. We’ll figure out how to get there together.

And when I finally finish every effort I will undertake, when there is nothing left my body or mind can do, I’m confident my small contribution will be a glorious footnote in The Official Journal of the American Academy of Neurology’s featured article, “Finally: The Key to Fighting MS Revealed.”

How was that?

“Four minutes and 50 seconds. Not bad.”

Oh! Then, Never Stop… Never Quit…!

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Bike MS: Willamette Valley 2017

Ride Details

Date(s): Friday, August 4 - Sunday, Aug 6, 2017

Start/Finish Location: Western Oregon University

main.nationalmssociety.org/goto/EMBK

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com

Consequences of the Inconsequential Ramblings of a Condemned Man

Complications, side effects, secondary, and tertiary symptoms. Call them what you want, these consequences are the truly crippling effects of multiple sclerosis. My MS is not going to kill me; I can live a long, albeit hindered, life with numbness, pain, bladder problems, spasticity, etc. Multiple sclerosis will not be the direct/primary cause of my death. If all goes to plan, MS will be no factor when I die at the glorious age of 109-years old.

But, and I’m just hypothesizing here, if complications as a result of multiple sclerosis are a cause of my premature demise, here’s my top five list of ‘MS Things That Are Probably Going to Kill Me’.

5 – I will suffocate/choke to death

I should have this down pat, as I choke on food and drink all day, every day. Choking is normally no cause for alarm; I maintain a carefully measured protocol, ensuring my airway is cleared with minimal fuss or mess. It remains, unfortunately, one of my less graceful moves, as I continue to find new ways to scare the hell out of myself at least once or twice a month.

How many times can you play the lottery before you win?

4 – I will die in a fall or have an accident

There are a multitude of scenarios under the general ‘accident’ category. Many of the more likely candidates list under common activities such as driving, cooking, or swimming. I’m currently safe in all areas, or I recognize my limits and keep clear, but I do understand my ability will change more than the ‘normal’ aging man.

I don’t go in water over my head, for my comfort level in the one arm, one leg dog paddle is minimal.

Brie, can I use this is my excuse for wanting to eat out all the time instead of cooking?

I’m a good driver, a safe driver, safer now than ever before. Nevertheless, I watch and evaluate this one constantly…

Falling should be a category of its own, separate from other accidents. While I’m cautious, I still fall regularly. This past winter, I cracked ribs when I fell getting out of the shower, then again shoveling ice and snow. Just a few years back, I suffered a dual-spiral fracture while roller skating (don’t ask, it sounded like a good idea at the time); I have the titanium rod in my leg as a permanent reminder. I still push myself, for it is worth the risk to avoid becoming immobile/sedentary. I still go beyond my limits regularly, for I don't know where the moving bar is, nor is my brain ready to accept some limitations. Today, I fall often, with minimal permanent consequence. All could change at any moment. Hopefully, I will recognize this before I regret it.

3 – I will die from an infection

Medications come complete with a variety of infection potentials. In 2007, I nearly lost my leg, or worse, due to the reaction that developed into a staph infection. Aspiration pneumonia is a constant concern, caused by the food and drink so often going into my lungs. Cuts and scrapes are common; often I don’t see and cannot feel them to properly care for the wounds.

2 – I will die from a medication reaction

Reactions and side effects are plentiful, some are critical while others are just annoying.

Biotin, or Vitamin B7, is a supplement normally taken to promote healthy hair and nail growth, as well as other common afflictions related to a deficiency in the vitamin. Normally, it’s taken in daily doses of 20 to 45 micrograms (mcg). There’s preliminary evidence, and a current phase 3 trial is underway, to support benefits with the use of high-dose biotin in the treatment of multiple sclerosis. I’m currently taking 300 milligrams (mg) daily, the equivalent of 300,000 mcg! As you can imagine, my hair and nails grow at a phenomenal rate.

Some of my medications cause nausea (take with food, take on an empty stomach).

Many of my injectable medications over the years have caused bruising and other site reactions.

I would love to know what the heck I am taking to give me such incredible/offensive gas!

Then there the bad reactions I’ve experienced: bacterial infections, staph infections, gastrointestinal reactions, anaphylaxis, meningitis.

I am on an immunosuppressant, which reduces my body’s immune system, I get it. Medications are one area where the Army Strong mentality of, “give me what you got, I can take it!” does not apply. I can’t take it, so please give me only as much as I need.

1 - I will kill myself

This is a hard phrase to imagine, even harder to write. I honestly have no idea how far down the rabbit hole I went on my other trips, nor do I care to find the answer. I don’t want this to happen, and am shaken to the core merely discussing the topic of my suicide.

Suicide is a reality for everyone. For those at increased risk, whatever the reason may be, it will always be a danger, one which will not go away and must be acknowledged, confronted, and respected if it is going to remain suppressed.

If you are in need, if you are scared, reach out.

You are not alone.

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The National MS Society is Here to Help

NEED MORE INFORMATION?

We Are Here

Our MS Navigators help identify solutions and provide access to the resources you are looking for. Call 1-800-344-4867 or contact us online.

NEWLY DIAGNOSED

If you or someone close to you has recently been diagnosed, access our MS information and resources.

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com

Emotion, Depression, and Other Inconsequential Ramblings of a Condemned Man

Finally, there is a topic in which I have zero concern! Yep, no problems here.

Thank you for reading.

…

…

Since you are still waiting, I assume you already know me and await my caveat, or you’re merely anticipating juicy bombshells. OK, here’s one:

* On several occasions, I completely lost the ability to manage and control the emotional effects of my MS. My condition has led to withdrawal, mood swings, irreparable damage to relationships, depression, and thoughts of suicide.

“Why would you admit such a thing?”

Good question [gold star for you]. There are so many reasons to come clean about my emotional fallibility.

First, if you know me already, I’m probably not dropping any bombshell. Perhaps you recognize my predicament and feel sympathy for me. Maybe you just think I’m an asshole. I would like the opportunity to change your perception.

If I constantly remind myself this condition exists, my awareness may be the tipping point to staves off catastrophic results in my next encounter.

And third, if I share my story enough, hopefully, someone out there will understand they are not alone in their fight. Because you are not alone.

I have spanned an infinite loop of emotional changes countless times over. I fully expect to revisit everyone throughout my long and prosperous future. The 5 Stages of Grief & Loss do not have one pass through, but as many as you can handle. I haven’t shared many of these before, but, since we’ve become so close, I figure I can confide in you.

My first struggle lasted more than four years.

Denial

The shock of my initial diagnosis was softened by the fact that I could continue to do my job in the Army. For some reason, unbeknownst to me, my commanders approved my request to remain in command of my Air Cavalry Troop in Korea. It was the greatest act of trust, faith, and confidence for me, a non-deployable soldier, to remain deployed overseas in command of troops. I worked to minimize the effects of my disability by charging full speed into my work and alcohol. Nine months later, I chalked up my return to the States as ‘their greatest mistake’. For my new life in the civilian world, work and alcohol remained always by my side.

Peppered throughout this stage were manic highs and lows, as I struggled to find a better life.

Anger

3 ½ years after diagnosis, which included seven moves, across three states and three continents, I crashed (literally) out of the first stage. In my wake, I left a lot of shattered relationships and despair. I grew angry with my MS for all it had taken from me.

Silliest reasons of all was war. I was angry my MS stole my life in the military before 9/11. I’m ashamed to admit I marginalized the suffering and sacrifice of so many by referring to it as something I missed out on. This was 2002 and 2003; I had yet to realize some of the amazing accomplishments I proudly boast of today; had I an ounce of foresight, my bar tabs would have been much, much lower.

Peppered throughout this stage were manic highs and lows, as I struggled to find a better life.

Bargaining

It was around this time when I drafted my first suicide note. I created a logical list of reasons why life is unbearable and unfair; on the opposite side, I crafted my fears, my hopes, my dreams. Multiple sclerosis and suicide peppered every thought. I would give anything, do anything, to figure how I can move forward past this state. I ran to the only place I could think of: to my mommy, my sister, and my brother. I was willing to give up everything, though I truly had nothing, if I could find an answer.

So, my sister took me in as I gave up everything; I stopped struggling through manic highs.

Depression

For seven months, I struggled through trying to rebuild the life and once had before multiple sclerosis, only to realize it was neither the life I wanted nor a life I was capable of achieving. Career searches, neurology appointments, psychological counseling, they all kept me just slightly on the correct side of sanity.

Acceptance

“If I just get a job, I can get back to my feet.”

“If I just get a girlfriend, I can get back on my feet.”

“If I can just get back to my feet…”

I finally stop searching for my fix, finding solace in where I was and what I had to offer. Volunteering at the VA hospital, I learned about true suffering… true sacrifice… true service. Only then, did I want to only build upon where I was in life/as a person, regardless of why I got there, and not where I should be.

I used to feel gratitude for the fact I went through the stages before I met Brie, before Eleanor was born. That round was merely the first, the most pronounced. I have struggled through so many rounds of Denial – Anger – Bargaining – Depression – Acceptance:

* Every hospitalization, every setback with my multiple sclerosis.

* The approach of my 43 years, 79 days birth date (the age my father was when he killed himself).

* The process through my disability classification of ‘100 % Total and Permanent’.

* The death and disability of friends, family, and loved ones, and the realization I don’t feel far behind.

There will be so many more stages to face, as there is much grief yet to come. In between this, there is an endless string of emotional windfalls and emotional challenges.

I accept that challenge.

[Challenge Accepted!]

And, I raise you one bit of sarcasm, courtesy of Eleanor.

[What do you call a puppy on a bicycle?

            A puppy bicycle!]

Exactly.

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Emotional Changes

Can be a reaction to the stresses of living with MS as well as the result of neurologic and immune changes. Significant depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their families.

Depression

Studies have suggested that clinical depression — the severest form of depression — is among the most common symptoms of MS. It is more common among people with MS than it is in the general population or in persons with many other chronic, disabling conditions.

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com

Fatigue, and Other Inconsequential Ramblings of a Condemned Man

Regarding fatigue, there has been a cycle in my life.

- When I was a baby: just fall asleep, wherever, whenever.

- When I was a child: just take a nap.

- When I grew older: just go to bed early.

- When I was in the Army: Suck It Up, Cupcake!

- After my Army days: just don’t go out tonight, go to bed early.

- When Eleanor was born: just take a nap.

I long for the days when I will be able to fall asleep, wherever, whenever. For now, I am in a constant state of limbo caused by my multiple sclerosis: Fatigue.

When does fatigue set in? When does it replace other words?

Tiredness?

Weariness?

Weakness?

Lethargy?

Laziness?

This is not only a battle with my multiple sclerosis, but it is also a struggle with every perception I face, with myself and others. Many symptoms have their telltale signs: a limp, my struggle with a fork, slurring and staggering, even my oddball forgetfulness, there are usually signs or indicators how ‘something is not quite right’ with KB.

My fatigue is something different. I may be groggy and lethargic, as if I have been up for the last 47 hours straight. Chances are, however, that is not the case. More likely, it seems as if I have plenty of energy, but I just don’t want to do anything except sit there and watch TV, drink a beer with my friends, or stare at the computer.

Is it physical? Mental? Emotional?

Yes. Yes. Yes.

Fatigue is the loss or degradation of energy, physical, mental, and emotional. I track so many points of data in my day, I’ve developed the ability to forecast fatigue:

- When I don’t get enough sleep (less than six hours of sleep, two or more days in a row).

- When I get too much sleep (greater than eight hours of sleep).

- When I don’t have enough sugar my diet/too much sugar in my diet.

- When it’s too hot/too cold.

- When I exercise too hard or too long/don’t get enough exercise.

- When I follow my regimen for too many days in a row/I have too much flux in my schedule.

-When I push myself too hard/don’t have enough activity in my day.

Then, there are those days where everything is perfect. My sleep, diet, exercise perfectly blend24 with the weather, and with all the outside demands of life. On those rare, jewel-like moments, it’s a 50-50 crapshoot as to whether I’m going to have energy or not.

I’ve never been middle-aged before. Maybe some of it has to do with my 45-year-old frame… I don’t know.

When Brie and I moved to Oregon, I fell in love with hiking and climbing. Nothing compared to the feeling of pushing my body up and down steep trails for hours, in peaceful solitude, with only my thoughts and music to comfort as I pushed my body harder. The first few hikes absolutely kicked my ass within 45 minutes. I thought it was just this Bronx-born body rejecting nature until a friend of mine recommended getting a set of trekking poles. Something simple like taking that added struggle of balance away made all the difference in my energy level. My speed increased 3x over while endurance seemed limitless.

With my MS, the added struggles of balance, strength, memory, coordination, etc. take their toll on what I can do. As my activity decreases, so does my ability to push the next day. It’s a cycle that feeds on itself…

Here’s about all I can commit to you. I will never use my fatigue as an excuse to avoid something. I will proudly proclaim any reason I am not participating: I don’t like it, I don’t like you, I have something better to do, I think it is stupid, I don’t like (fill in the blank).

If, instead, I just avoid participation with no excuse offered, my wants or likes are irrelevant.

I can’t. For the moment, I just cannot do anything. I promise, though, when I can, I will.

Unless I really don’t like you (in which case I will tell you).

But for now, I’m off to the gym. My body is like it has some energy for physical therapy. I hope it lasts the drive there…

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Fatigue

Occurs in about 80% of people, can significantly interfere with the ability to function at home and work, and may be the most prominent symptom in a person who otherwise has minimal activity limitations.

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com

Vertigo, and Other Inconsequential Ramblings of a Condemned Man

I live my life in ‘The Bag’.

The AH-64 Apache attack helicopter has a night vision system built into the aircraft. Attached to the nose of the helicopter, the Pilot Night Vision System/Target Acquisition and Designation System (PNVS/TADS) is approximately 14 feet in front of and 3 feet below the pilot’s station. The system detects heat variances to create an image, which is digitally projected onto a monocle in front of the pilot’s right eye. The TV screen field-of-view has a limited range of up 20 degrees and down 45 degrees, while looking 90 degrees left or right, and can move at approximately 120-degrees per second. This is the PNVS, the TADS is comparable, though much slower (60-degrees per second). The system is ‘slaved’ to the pilot’s head electronically (look left, and the PNVS looks left…).*

The point is, everything you see is 14 feet in front of and 3 feet below the front of the helicopter versus the location of your eyeball, in a hazy shade of green phosphorous, moving significantly slower than your head will (taking time to catch up if you turn too quickly), and only shown through one eyeball. Life can be nauseating.

So, they put you in ‘The Bag’ during your initial training in the Apache. To avoid competition with your other eye, your cockpit is sealed tight so the only visual cues you have come from the ‘Green-Eyed Monster’.

Your visual system is all discombobulated and telling you one thing.

Your vestibular system (your inner ear) is telling you something else.

Your proprioceptive system (seat of your pants) is telling you a third.

Which do you believe?

Nauseating, until you learn how to interpret your new world and read new inputs.

This is life with multiple sclerosis; what your eyes tell you, what your sense of balance tells you, and what you are seat-of-the-pants feeling tells you often come in direct conflict with reality. Nauseating may be the greatest understatement of my life; my new world is always changing.

In a helicopter, you are taught to rely on your instruments; don’t execute a maneuver simply because your body is telling you to do something; rely on your instruments as your fourth sensory input.

What can I rely on with my person? When I stand up, what my eyes tell me (when my vision is clear and stationary) often conflict with what my inner ear/balance tells me (when the signals work), as well as what my physical sensations tell me (when I can feel them). I have no instruments (at least not until Google develops a contact lens with a built-in attitude indicator, altimeter, and ground speed sensor). Nauseating, until I learn how to interpret my new world and read ever-changing inputs.

Army Aviation taught me how I can have multiple sclerosis and yet still function. I can’t rely solely on one sensory input, I must use them all. On some occasions, one of my sensors fail; I need to recognize that situation promptly, switch focus away from the failure and onto remaining sources, then LAND AS SOON AS PRACTICABLE; the primary concern is the urgency of the emergency.

When input fails on multiple sensors, LAND AS SOON AS POSSIBLE; the primary concern is survival of the occupant.

So, if I sit down or suddenly do not want to know anything, my primary concern may be survival of my occupancy.

*This information is unclassified and, since I retired 17 years ago, most likely outdated.

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Dizziness and Vertigo

People with MS may feel off balance or lightheaded, or — much less often — have the sensation that they or their surroundings are spinning (vertigo).

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com

Spasticity, and Other Inconsequential Ramblings of a Condemned Man

“Spaz!”

Maybe it was a 70s term, but I never hear kids calling each other ‘Spaz’ anymore; I don’t hear it on TV either. Of course, the decline in usage of a derogatory term is never a bad thing. I must confess, I’m guilty. I still chuckle when I hear the word.

“Spaz!”

[Hee Hee]

See? The word still makes me laugh, even if I’m poking fun at myself.

“Hi, my name is Kevin, and I am a Spaz.”

[Hee Hee]

To word my predicament in a more politically correct fashion, I suffer from varying degrees of spasticity directly contributed to my Multiple Sclerosis. This symptom has plagued me since the onset of my disease in 1999, taking several different forms. As with many of my issues, unfortunately, this is worsening.

First, it was cool.

I was in command of an Air Cavalry Troop, station in Korea when I was first diagnosed. I was immediately grounded, never to fly helicopters again, but I remained in country for nine months. My Troop Mission was maintenance and repair of the Apache helicopters assigned to our Squadron, a job I was still able to perform.

There was nothing like being a Troop Commander at Camp Eagle (Wonju, Korea). With 135 soldiers under my command, I was a big fish in a really little pond. Our tiny camp held the airfield, hangar, barracks, and a bar. There wasn’t much do in Korea beyond working and drinking; I was quite proficient in both! As the commander, I often had the chance to drink with my soldiers. Nothing says, “I am the Commander, the Big Cheese, the HMFIC,” quite like sitting in a bar, decked out in your flight suit and Cav Stetson, when your hand spasms, shattering the highball glass you’re holding, blood running down your hand, and you show no reaction/no emotion (I ain’t got time to bleed).

With all my other problems, that one wasn’t too bad.

Later on, it was an annoyance.

Muscle spasms, mostly in my calves, plagued me for years. My MS symptoms were generally mild at the time, so not much focus was put on treating this as part of my ongoing fight with multiple sclerosis. Everyone had recommendations on what I ‘should’ do to treat my leg cramps.

“You should eat more bananas. Are you eating bananas? If you are, you not eating enough bananas!”

- Outside Voice: “Stop saying banana!”

- Inside Voice: “Banana, Banana, Banana.”

“You should drink tonic water. That will get rid of your cramps. Drink lots of tonic water.”

- BTW: I hate tonic water

I was staying at the parents’ house of a friend. I woke up in the middle of the night with a ‘What the hell is that?’ reaction one night. There was a bar of soap in the bed, underneath the mattress cover.

“That’ll get rid of cramps in your legs.”

- Just no.

Now, it is crippling.

I wake up in the morning with such severe spasms and my foot and ankle, I can’t do a thing. Do you have any idea how difficult it is to walk on your ankle?

My leg braces are sometimes ineffective. My L300, designed to compensate for damaged nerves and weakened muscles causing foot drop, cannot compensate for the strength of the opposite muscle having spasticity. My utility AFO is just too flimsy to overcome the deformation caused by involuntary spasms. The MOAB is great, if I can actually straighten my leg sufficiently to get my foot in the brace.

Spasms in my left hand will ball my fingers up into a fist to the point it is immobile; a weak, underpowered, dead stump with a fist-ball hanging from the end.

Spasms in my bladder can have unintended consequences, ranging from ‘Can’t pee’ to ‘Please stop peeing’.

Spasms out-of-nowhere in my chest, neck, arms, and abdomen can make me look like, well, a Spaz!

[Hee Hee]

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Spasticity

Refers to feelings of stiffness and a wide range of involuntary muscle spasms; can occur in any limb, but it is much more common in the legs.

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com

Swallowing, and Other Inconsequential Ramblings of a Condemned Man

I have never had someone spit their drink in my face, though I surely deserved it on several occasions. No, you must screw up royally to have someone spit in their drink in your face. It is a public shaming spectacle deserved of only the most egregious behavior.

A buddy of mine, in the middle of a restaurant, in front of our wives, committed the greatest of sins.

He sat across from me.

Man, was he soaked from the chest up! Luckily, I was only drinking water at the time.

When a person swallows, there is a distinct rhythm to the muscles, cartilage, and tissue of the throat. Here’s a breakdown of the three phases to swallowing, and were my body fails me:

Phase 1 - this is the oral phase, biting and chewing. My greatest issue in this phase is eating my food like I am a damn 17-year-old plebe at West Point again (big bites, three chews and swallow).

Phase 2 - this is the pharyngeal phase. The epiglottis closes over the top of the larynx, preventing food and liquid from going into the lungs. My muscles often fail to time this maneuver effectively. I’ve watched these results through an x-ray video of myself swallowing, called a video fluoroscopic swallowing exam. When I swallow, a portion goes into my lungs, sometimes just a bit, other times a shitload (FYI – inhaling a ‘shitload’ of anything is not good for you). My doctor tried to console me. Generally, this is not a physical problem since I am young(ish) and my lungs can cough up and expel the aspirated material. As I age, or unusual situations, my ability to expel will decrease, therefore elevating my chances of developing aspiration pneumonia (bacteria growing in my lungs from the food or liquid inhaled). That was not much of a consolation.

Note #1: I have a doctor’s note, and corroborating video evidence, for my sideshow skit of splitting food and beverage all over the place. I apologize profusely.

Note #2: this is easily in my top five list of ‘MS Things That Are Probably Going to Kill Me’. I’m thinking of starting my own Deadpool.

Phase 3 - the muscles coordinate their rhythm, moving food down the esophagus to the stomach. I already know ‘I ain’t got no rhythm’, so there’s no need for my MS to remind me constantly. Yet, still, it does…

About 10 or 12 times a day, my esophagus misfires. My delicious bite of Brie’s chicken casserole remains lodged in my throat. In and of itself, this not a problem. I can wait for the muscles to re-sync or add a little sip to wash it down.

Inside Voice: “Great plan, moron.”

Outside Voice: “Thanks!”

Inside Voice: “You forgot about the issues.”

Outside Voice: “What issues?”

Inside Voice: “What about the fact that while your esophagus is swallowing, your epiglottis is covering the larynx and preventing breathing? Or, what about the fact that food pressed against your esophagus can become lodged, or stuck, even after normal swallowing resumes, continuing your coughing and breathing fiasco?”

Outside Voice: “Oh, yeah! I forgot about that. That’s bad.”

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Swallowing Problems

Swallowing problems — referred to as dysphagia — result from damage to the nerves controlling the many small muscles in the mouth and throat.

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Never Stop… Never Quit…®

Kevin Byrne

Portland, OR

neverstopneverquit.com

neverstopneverquit.blogspot.com