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What’s not to like about the internet? Whatever you want to learn, the internet has it available for free. Whatever you want to believe, there is sufficient information (and, misinformation) to reinforce your beliefs.

What can the internet offer to someone who has only days to live? Miracle cures? Or, gallows humor?

I suspect some of both so let’s go with 145 Death Quotes?

Haruki Murakami:

Death is not the opposite of life, but a part of it.

I understand the sentiment but I would prefer to live and not die. Maybe something was lost in the translation. Kanji be hard.

Emily Dickinson:

That it will never come again is what makes life so sweet.

So much for the afterlife.

J.K. Rowling:

To the well-organized mind, death is but the next great adventure.

The Bible describes death as sleeping. All adventures come after sleeping. Except maybe to Harry Potter.

Henry David Thoreau:

Live your life, do your work, then take your hat.

Succinct but not comforting. I don’t wear hats.

Khalil Gibran:

For life and death are one, even as the river and the sea are one.

Other than wet, no, they’re not one. They’re different. Good grief.

Terry Pritchett:

No one is actually dead until the ripples they cause in the world die away.

What if you didn’t cause any ripples?

Jiddu Krishnamurti:

Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone.

That won’t be much of a conversation, though.

Michael Landon:

Whatever you want to do, do it now. There are only so many tomorrows.

No afterlife for Bonanza, but I agree. Do it now.

Leo Buscaglia:

Death is a challenge. It tells us not to waste time… It tells us to tell each other right now that we love each other.

It’s hard to argue with that.

George Orwell:

A normal human being does not want the Kingdom of Heaven: he wants life on earth to continue.

Or, put another way, everybody wants to go to heaven but nobody wants to die to get there. Did that come from 1984? Or, Steve Jobs?

Glenn Ringtved:

What would life be worth if there were no death? Who would enjoy the sun if it never rained? Who would yearn for the day if there were no night?

I don’t equate death and life with sun, rain, day, or night.

Epicurus:

Why should I fear death? If I am, death is not. If death is, I am not. Why should I fear that which cannot exist when I do?

Stick to cooking, dude.

Stephen King:

You needn’t die happy when your time comes, but you must die satisfied, for you have lived your life from the beginning to the end.

Scary math.

Mahatma Gandhi:

Live as if you were to die tomorrow. Learn as if you were to live forever.

I like that.

William Wallace:

Everyone dies but not everyone lives.

Indeed.

Jean de La Fontaine:

Death never takes the wise man by surprise, he is always ready to go.

OK, I am ready. What does that say?

Anyone afflicted with a neuromuscular disease— anything that affects nerves and muscles— knows that a diagnosis does not come overnight. It takes time. Meanwhile, the disease progresses.

Before our trip to Mayo Clinic we had ALS at the top of the list; mostly thanks to growing fasciculations, muscle problems, and the aforementioned BSS (camptocormia; bent spine syndrome). The neurologists at Mayo Clinic conducted a few weeks of tests and also concluded that ALS reigned supreme at the top of the list.

The medical advice?

It would be wise to get your affairs in order.

At the time I could still walk and talk and breathe and drive. Relative to most ALS diagnoses, my symptoms seemed modest. Within weeks breathing became very difficult.

An alert and experienced pulmonologist put two and two together and came up with respiratory onset ALS. His response was instant. NIV.

The PubMed Abstract:

Respiratory muscle involvement is one of the main prognostic factors in amyotrophic lateral sclerosis (ALS). Acute respiratory failure is sometimes the first manifestation of the disease, although onset can be more insidious.

In the present retrospective study, it was proposed to review the clinical features and to assess the effects of non-invasive ventilation (NIV) on the prognosis of patients with respiratory onset, which was taken to be present when the first symptoms of muscular weakness were dyspnoea at exertion, dyspnoea at rest, or orthopnoea.

Respiratory onset ALS is uncommon, since it accounts for less than 3% of ALS cases. ALS with respiratory onset has some common clinical features: male predominance, frequent camptocormia or dropped head, frequent widespread fasciculations, limb mobility fairly well preserved and significant weight loss in the early stages.

ALS patients with respiratory onset still have a poor prognosis compared with those with bulbar or spinal forms. NIV should be proposed promptly because it improves the symptoms, general state of health and survival time.

I have all the basics. Difficulty breathing. Camptocormia. Fasciculations, good limb mobility, 70 pound weight loss.

Why am I still here 42 months after initial symptoms?

NIV.

Non-invasive ventilation. A ventilator and mask which are now in use more than 23 hours a day. Life has been extended thanks to an alert pulmonologist.

Diseases come in a wide variety and many have their own unique names that most of us never heard until a diagnosis.

Respiratory onset ALS has two major characteristics which present early. Difficulty breathing. And camptocormia.

Camptocormia, also known as bent spine syndrome (BSS), is a symptom of a multitude of diseases that is most commonly seen in the elderly. It is identified by an abnormal thoracolumbar spinal flexion, which is a forward bending of the lower joints of the spine, occurring in a standing position.

This classification differentiates it from a similar syndrome known as kyphosis. Although camptocormia is a symptom of many diseases, there are two common origins: neurological and muscular.

BSS?

Bent spine syndrome. My spine is bent in the lower back. I cannot stand up straight. Legs, feet, and balance are strong. Shoulders, arms, and hands are not too bad, either.

But not the back.

That means I need a roller walker to go from bedroom to bathroom and back, or living room to bathroom and back.

What’s the commonality?

Trips to the bathroom. And back.

Is that a real question? After all, if we don’t breathe we don’t live, right?

How about Prince Hamlet’s time honored question, “To be, or not to be?”

To be, or not to be, that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take Arms against a Sea of troubles,
And by opposing end them: to die, to sleep;
No more; and by a sleep, to say we end
The heart-ache, and the thousand natural shocks
That Flesh is heir to?

Blah, blah, blah.

It seems as if poor Prince Hamlet has had enough of the discouragement in life.

I understand the sentiment and I’m not even a prince. The best comparison I could make is “To breathe, or not to breathe?”

The body has a rather natural tendency toward the proper answer but with a similar result. Breathing trumps eating. ALS has robbed me of the ability to use most of my breathing muscles. The diaphragm went first. Now, the chest muscles have weakened and can support non-ventilator breathing for only a few minutes at a time.

Yet the ventilator mask needs to be off so I can eat or drink.

Hmmm. What to do?

For now, I can take the mask off for about five minutes at a time. That gives me six quick, 5-minute meals a day. The 10-minute bath leaves me completely exhausted as breathing on my own for even that amount of time is demanding, tiring, and dangerous.

To breathe, or not to breathe? That is the question…

The initial consideration is rather simple and straightforward. I will breathe as long as I can. At some point I wont be able to drink or eat because the ventilator mask needs to be removed and when it comes off then breathing will stop.

That time is near.

Then what?

In general, our body’s joints have movement within a specific range that varies a bit, person to person. You can move your shoulders, arms, and hands in various directions. Legs and feet, too. Even your back has a range of motion.

The range through which a joint can be moved, usually its range of flexion and extension, as determined by the type of joint, its articular surfaces, and that allowed by regional muscles, tendons, ligaments, joints and physiologic control of movement across the joint.

As we age, our joints and connected body parts lose some of that range of motion. ALS can be considered rapid aging as it reduces and limits range of motion; sometimes quickly, sometimes insidiously slow, but faster than normal aging.

Limited range of motion refers to a joint that has a reduction in its ability to move. Motion may be limited because of a problem within the joint, swelling of tissue around the joint, stiffness of the muscles, or pain

Respiratory onset ALS differs from more typical versions of the disease in that breathing muscles and back muscles are affected first, then— depending on how long a persons lives— limbs (legs, feet, arms, and hands), swallowing, and speech may be affected.

If breathing muscles are affected first, then what keeps me alive?

The ventilator. For the most part, the ventilator is a machine breathes for me and that extends life span beyond what is normal for most people who are afflicted with respiratory onset ALS.

What does that mean?

Other ALS symptoms— spastic muscles and limited range of motion— begin to appear. For example, my arms no longer can be held over my head. I cannot scratch my back or lift anything that weighs more than five pounds. Typing with spastic fingers is difficult. Even holding a fork or spoon has become an effort.

Can I put on the ventilator mask?

That has become a challenge each day. My physical therapist has given me a laundry list of specific exercises to keep joints and muscles working properly; to allow for enough range of motion to perform certain tasks; standing, putting on the ventilator mask, even typing (four of 10 fingers have decided to chart their own movement course).

Range of motion is in decline all over my body.

This is not fun.

ALS damages nerves that connect to and control muscles but not everyone with the disease is affected the same way. Yet, there are general similarities. For example, most people with ALS suffer from leg, feet, arm, and hand problems, while a significant number also have trouble swallowing and speaking. And, most die of respiratory problems.

I have had ALS long enough that it has begun to affect more muscles than my diaphragm, accessory breathing muscles, and paraspinal muscles in my back.

My grip has weakened on one side of my hands and fingers but not the other side. My grip is both weak and strong. A paradox?

It is a statement that, despite apparently valid reasoning from true premises, leads to a seemingly self-contradictory or a logically unacceptable conclusion. A paradox usually involves contradictory-yet-interrelated elements that exist simultaneously and persist over time. It is a statement that, despite apparently valid reasoning from true premises, leads to a seemingly self-contradictory or a logically unacceptable conclusion. A paradox usually involves contradictory-yet-interrelated elements that exist simultaneously and persist over time.

How can a grip be both weak and strong at the same time?

That’s how ALS works sometimes. For example, I can shake hands with a firm grip; so firm and strong that no one would suspect nerve damage or a grip problem.

Yet, I cannot hold a fork or spoon in the typical manner between thumb and index finger. Both are too weak so I stab my food by holding the fork as if it were a knife in my fist. It’s clumsy but it works. One side of the hand’s grip is strong and the other is not.

What about chopsticks?

I can hold the chopsticks between thumb and index finger but there is insufficient strength to hold any food. Three fingers on my right hand are so weak they cannot find proper keys on the keyboard.

I can type but it ain’t pretty. The more I type the worse my typing becomes. The more I grip the mouse, well, nothing happens. That side of my hand– those particular muscles– are weaker than in the past but not noticeable by someone who shakes my hand, yet the finger that clicks the mouse on my computer does not always work.

In another paradox, the paraspinal muscles in my upper back are strong while the same muscles in the lower part are incredibly weak; insufficient for me to stand up straight. I can bend down and easily pick up something on the floor yet I cannot touch the top of my head.

ALS is a nasty, debilitating disease.

There are hit men and there are men who employ the HIIT exercise routine. I’m a HIIT man.

High-intensity interval training (HIIT), also called high-intensity intermittent exercise (HIIE) or sprint interval training (SIT), is a form of interval training, a cardiovascular exercise strategy alternating short periods of intense anaerobic exercise with less intense recovery periods, until too exhausted to continue.

Wait a minute. I have an advanced version of ALS— amyotrophic lateral sclerosis— how can I get involved in HIIT exercise training?

It’s just like how Post-it Notes were invented. Inadvertently.

Dr. Spencer Silver, a chemist at 3M Company, invented a unique, low-tack adhesive that would stick to things but also could be repositioned multiple times. He was trying to invent a super-strong adhesive, but he came up with a super-weak one instead

It took years to catch on but Post-it Notes are famous and useful.

So, what’s the benefit of a HIIT exercise regimen for someone with ALS? The key is to use muscles that are not getting used much. That means stretches and some degree of exercise. Both combine to improve oxygenation (help to remove CO2 from blood and improve oxygen flow).

The problem I ran into was that just going through the motions of exercises and stretches did not increase heart rate very much. So, somewhat inadvertently, I upped the intensity and frequency of certain exercises; squats, bends, biking, even tiptoes— most while holding onto my roller walker’s handlebars.

That meant that muscles were getting used more but in a shorter period of time. It was difficult and more tiring at first but in less than a week I could feel a difference; both in breathing effort and mobility, plus heart rate and recovery rate increased and improved, respectively.

The result? I feel better. I move better.

HIIT exercises are not for everyone but a regimen can be modified to be beneficial almost regardless of physical circumstances.

I’m a HIIT man.

The title sounds like an airlines; perhaps somewhere in Europe but much closer to home than you might think.

Aerophagia:

Aerophagia is a condition of excessive air swallowing, which goes to the stomach. Aerophagia may also refer to an unusual condition where the primary symptom is excessive flatus, belching is not present, and the actual mechanism by which air enters the gut is obscure.

Anyone who uses a CPAP or BIPAP machine understands the mechanism of aerophagia.

Gas. Lots of gas. Enormous amounts of gas. Gas like you’ve never seen or heard before.

Aerophagia is associated with chewing gum, smoking, drinking carbonated drinks, eating too quickly, anxiety, high continuous positive airway pressure and wearing loose dentures and wearing masks.

There it is. Mask. In my case, the ventilator mask.

Most people who use a CPAP or BIPAP machine will complain about the amount of air swallowed that then becomes excess gas.

Did I mention enormous amounts of gas?

If enormous amounts of gas are present when using a CPAP or BIPAP machine for six or eight hours a day, then how much gas is present when a ventilator is used 23 hours a day?

Enormous times three?

That sounds about right. Aerophagia cannot be avoided when such non-invasive ventilation takes place. All things considered, and as ugly as the effects of aerophagia may seem, the need for air to breathe does trump the need for a pleasantly fragrant bathroom.

What is zero gravity? Weightlessness? Or, a setting on our recliner bed?

Zero Gravity or Zero-G can simply be defined as the state or condition of weightlessness. It also refers to the state in which the net or an apparent effect of gravity (i.e. the gravitational force) is zero.

Let’s go with what’s behind door #2, Monte.

It’s obvious I cannot achieve zero gravity in my current state of ALS but our recliner bed has a setting called zero gravity. I like it but cannot use it. It’s a bit too flat for me and I sleep better with the back more upright.

The zero gravity position in the bed seems to resemble what an astronaut floating through space might feel. Feet and legs are slightly elevated above the mid-section, while chest arms and head are elevated, too.

It’s a very comfortable position for sleep.

My zero gravity is a bit different but provides a similar sleep experience. The recliner bed allows for my head and back to be raised upwards, and a few memory foam pillows support my legs and feet.

My personal zero gravity position and the ventilator combine for some very good sleep.

Except for aerophagia.

That is a topic of sufficient substance as to demand its own article.