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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.

iPhone, iPad, Mac, and HomePod users are familiar with Apple’s Siri.

Siri (/ˈsɪri/ SIRR-ee) is a virtual assistant that is part of Apple Inc.’s iOS, iPadOS, watchOS, macOS, and tvOS operating systems. The assistant uses voice queries, gesture based control, focus-tracking and a natural-language user interface to answer questions, make recommendations, and perform actions by delegating requests to a set of Internet services. The software adapts to users’ individual language usages, searches, and preferences, with continuing use. Returned results are individualized.

I use Siri a number of ways.

Hey, Siri. Tell me a knock-knock joke.

Siri has an endless supply of knock-knock jokes but can be useful in many other ways. I use an application on my iPhone and iPad called Speech Assistant. I can type what I want to say, tap a button, and Siri speaks for me.

Words and phrases can be added and saved and used with little more than a category selection and a tap.

I still have a voice though it is more of a whisper these days, thanks to 22 or more hours a day on the ventilator. Siri is my new voice. I use the app to communicate with my wife.

My favorite phrase?

Please jump up and down.

Siri says please and my wife still won’t jump up and down.

A family friend gave me a Groot planter with a jade plant already growing inside. What a delight. Groot signifies resurrection and after a few years of battling ALS I look forward to that day.

What is Groot?

Groot (/ɡruːt/) is a fictional character appearing in American comic books published by Marvel Comics. Created by Stan Lee, Larry Lieber and Jack Kirby, the character first appeared in Tales to Astonish #13 (November 1960). An extraterrestrial, sentient tree-like creature, the original Groot first appeared as an invader that intended to capture humans for experimentation.

I was a comic book collector and I’m a child of the 60s so I am familiar with Groot. Here is Groot as a planter.

If you saw the movie Guardians of the Galaxy then you are familiar with Groot and Baby Groot.

Guardians of the Galaxy (retroactively referred to as Guardians of the Galaxy Vol. 1) is a 2014 American superhero film based on the Marvel Comics superhero team of the same name.

In the movie, Groot sacrifices himself for his comrades but returns as a sapling; a resurrection of sorts.

My Groot’s plants are dying. Groot came with a luscious jade plant which withered away in a month. We replaced that plant with another that also died. Ominous? I asked my wife to try a philodendron. They are not easy to kill. The philodendron growing out of Groot also died.

Now we have a philodendron growing in water. So far, so good. Groot looks happy and healthy. I’m still alive, too.

As the end draws near it has become obvious to me that changes are needed. It’s time to move the goalposts.

Moving the goalposts (or shifting the goalposts) is a metaphor, derived from goal-based sports, that means to change the criterion (goal) of a process or competition while it is still in progress, in such a way that the new goal offers one side an advantage or disadvantage.

Goals? I’m dying. What goals do I have?

Each day is a challenge, yes, but each day has goals, objectives, a need to accomplish something other than just sit and wait for my wife to feed me.

ALS is a progressive disease but sometimes comes with plateaus where the ongoing degradation of muscle control seems to slow down to a crawl and even appear to stop. I have yet to have that luxury and I can understand why some with ALS would not appreciate that extra torture.

It’s time to move the goalposts because daily objectives keep me going but some of those objectives can no longer be met. For example, until late last year I would go for a ride every day. That required walking to the car, driving around, then walking from the car to home.

I cannot walk now and cannot breathe without ventilator use for more than a couple of dozen minutes at a time. That’s just not enough time to do a daily ride in the car. The goalposts needed to be moved. Thanks to YouTube videos and a 4K TV I can walk through London or Tokyo or view tourist destinations in Italy, China, or Texas.

OK, maybe not Texas.

When an objective can no longer be met then it’s game over or there is a need to modify the objectives, or to move the goalposts down the field.

For example, I used to run each morning and my daily goal was to hit 4,000 exercise steps and get heart rate up to 90-percent of maximum for my age. The goalposts needed to be moved. I can’t run but I can use an exercise bike on my lap and still get 4,000 steps each day.

See?

What about heart rate?

Sorry. That specific goal cannot be reached anymore but I can get the heart rate up by moving to the upright exercise bike and pedaling for a couple of minutes at a time. That results in better breathing because the heart— far less affected by ALS than legs or arms or diaphragm— gets some much needed exercise.

I could go on with more examples but the idea is simple. Moving goalposts has a negative connotation but can be positive, too.

I fell down last week and ended up with a nasty bruise, a distasteful abrasion— both painful— and some medicine which made my world feel pretty good considering the circumstances.

For two days.

One of the side effects of the medicine is a bladder that refuses to empty. Full bladder equals discomfort. Over full bladder equals significant pain. Think Dr. House on the TV show House. His addiction to pain medicine caused him to use a catheter to pee.

Catheters are not exactly uncommon but they can be painful to insert, painful to remove, and painful while just sitting there and moving urine from the bladder to a nearby bag.

The commonality is pain.

The paradox?

an argument that apparently derives self-contradictory conclusions by valid deduction from acceptable premises… one (such as a person, situation, or action) having seemingly contradictory qualities or phases

Bad news, meet good news. With a catheter you don’t have to get up to go to the bathroom when the urge arises to pee. I can feel the urge a bit as the bladder fills but then it subsides because the catheter did all the work and the pee automatically went into the bag.

That’s kinda nice, actually, hence the paradox. Catheter bad. Catheter good.

I still want it out.

How long has it taken for you to live your life? 30 years? 40 years? 50 or more years? We measure our lives in years and yet a lifetime may seem like little more than a blink of an eye.

How long is that?

According to researchers, not very long.

The duration of a blink is on average 100–150 milliseconds… and between 100–400 ms according to the Harvard Database of Useful Biological Numbers.

That ain’t very long, folks.

My lifetime has gone by in the blink of an eye. Childhood, adulthood, marriage and children, various and sundry careers. Gone in the blink of an eye.

I started taking photos with a 35mm camera when I was in my early 20s. Over the next 30 years I took over 4,000 photos and stuffed them into a dozen photo albums.

Since then, the age of digital photography eliminated the need for expensive film, processing, and printing. In the last 20 years I took over 27,000 photos and they are stored on my phone.

Easy to view. Easy to share.

One of my projects was to chronicle my lifetime in photos. My parents and grandparents’ photos numbered in the hundreds and crossed multiple lifetimes. My 31,000 photos cover my lifetime and yet with all that documentation of a good life, it still went by in the blink of an eye.

Remember that the next time you blink.

What are the basics of life? For most of us, breathing and eating are high on the list. Put gravity on there, too.

Most people with ALS will die of respiratory distress. Breathing muscles stiffen and stop working properly and it reaches a point where even mechanical ventilation cannot sustain life.

Mechanical ventilation?

A ventilator. A breathing machine. I have one. My version of ALS is called respiratory onset. Breathing muscles— diaphragm and related accessory muscles— are affected first and that causes breathing difficulties.

Respiratory failure is common in the advanced stages of amyotrophic lateral sclerosis (ALS) and is the major cause of morbidity. In contrast, it is rare that ALS presents with respiratory failure as the sole initial manifestation

I use a ventilator more than 22 hours each day.

That means I breathe on my own— with difficulty, as breathing muscles tire out quickly, begin to cramp, and then cause pain— while eating a meal, taking a bath, or during a TeleHealth call.

Yes, COVID has changed how health care works.

Which comes first? Breathing? Or, eating? And what happens when ventilator use hits 24-hours a day and there is no time, off the ventilator, to eat? Or, go to the bathroom?

I’ll let you know. I’m getting there.

Last night, just before bedtime, I weighed myself on the bathroom scale. 166.6 pounds. I weigh myself every morning at about the same time. Thanks to a good diet and exercise routine I have gained about 15 pounds in the past three months. This morning my weight was 166.6 pounds. No change from the night before.

What about all those sixes? I’m not superstitious but 666 is not a number I want to see pop up too many times during the same day. In the Bible, 666 is the number of the beast. Wikipedia:

The number of the beast (Greek: Ἀριθμὸς τοῦ θηρίου, Arithmos tou Thēriou) is associated with the Beast of Revelation in chapter 13, verse 18 of Book of Revelation. In most manuscripts of the New Testament and in English translations of the Bible, the number of the beast is six hundred and sixty-six

Uh oh. Or not? Don’t worry. The number 666 was only part of 166.6 pounds but it was interesting that the same number appeared before bedtime and after awakening in the morning.

Dig through the Wikipedia article and you’ll find many interpretations of the number 666. Here’s one near the bottom.

Jehovah’s Witnesses believe that the beast identified by the number 666 represents the world’s unified governments in opposition to God. The beast is said to have “a human number” in that the represented governments are of a human origin rather than spirit entities. The number 666 is said to identify “gross shortcoming and failure in the eyes of Jehovah”, in contrast to the number 7, which is seen as symbolizing perfection.

That seems a reasonable interpretation.

In 2017 Jehovah’s Witnesses said some Congolese churches made the claim that a World Wide Web (WWW) address printed on Jehovah’s Witness literature is an indication that the literature is demonic, because WWW corresponds with 666

That interpretation does not seem to be as reasonable. There are a few hundred million websites that all begin with WWW.

Since my time is running out I’m not going to worry about the superstitious concerns over 666 but it is interesting how many people avoid it wherever possible. For example:

• In 1989, Nancy and Ronald Reagan, when moving to their home in the Bel-Air section of Los Angeles after the 1988 election, had its address—666 St. Cloud Road—changed to 668 St. Cloud Road.
• In 1988, the address of Chicago’s American Furniture Mart building was changed by its new owner from 666 to 680 N Lake Shore Drive, ostensibly to distance the new tenancy from the former owners’ financial problems.
• In 2003, U.S. Route 666 in New Mexico was changed to U.S. Route 491. A New Mexico spokesperson stated, “The devil’s out of here, and we say goodbye and good riddance.”
• Some women expressed concern about giving birth on 6 June 2006 (6/6/06).
• In November 2013, Codie Thacker—a cross-country runner at Whitley County High School in Williamsburg, Kentucky—refused to run in her Kentucky High School Athletic Association regional meet, forfeiting a chance at qualifying for the state championships, when her coach drew bib number 666.
• In 2015, US Representative Joe Barton had the number of a legislative bill he had introduced changed from 666 to 702 because “the original bill number carried many different negative connotations”, according to a spokesperson.

I look at 166.6 pounds as a good thing.

The list of symptoms experienced by those with ALS grows longer the longer we live. Fasciculations, cramps, spasticity, and loss of muscle control; but there’s more to it than that.

Excess saliva.

Say what?

Dr. Giancarlo Garuti:

ALS leads to progressive muscle involvement and requires a complex multidisciplinary approach to manage increasing disability which goes beyond motor neurons. Sialorrhea is, amongst others, one of the most disabling symptoms in ALS. The complexity in managing saliva is due to a muscular spasticity and to a scarce palatino-lingual muscles control.

Excess saliva?

Yes. Though my particular brand of ALS is respiratory onset, more typical symptoms have begun to appear.

Excess saliva.

Lots of saliva. More saliva than you can imagine. But no drooling. Yet. Well, other than watching my wife undress before bedtime (I wear sunglasses to mitigate the effects).

As it turns out, all that excess saliva— definitely a bad symptom when drooling is common— has a side benefit.

Using a ventilator and mask for 20 hours a day causes an excessive amount of dry mouth; so dry that the tongue flops around like a big piece of rubber inside a tiny human cave. But with excess saliva only a muscle squeeze away all that dry mouth can disappear within seconds.

Anything else? Swallowing, often a problem for those with ALS, is much easier, and coughing is reduced because saliva is abundant.

Excess saliva is a bad symptom with a good benefit. For now.