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Have you ever noticed what happens to old people when they get sick? Their eyes begin to sink back into the head.

That happens to zombies, too. It’s happening to me even though my weight today is the same as it was a year ago. Thanks to a combination of ALS and age I have become a walking talking zombie.

Except for the walking part.

I first noticed some darkness left and right of my eyes a month or so ago. If I close either eye I can see my nose. Yes, it’s that prominent. The dark shadows to either side of my eyes have become visible to me. At first, I thought my 20/20 eyesight was moving quickly toward tunnel vision.

Tunnel vision is the loss of peripheral vision with retention of central vision, resulting in a constricted circular tunnel-like field of vision.

Uh oh.

Upon closer examination, I determined that the shadows I could see to the left and right of each respective eye actually is my head. I can see my eyeball sockets as a shadow.

Thanks to a growing array of stiff muscles combined with deepening eyeball sockets I am becoming something of a zombie; albeit with nicer clothing, less hair, and better skin.

All of us change as we age. Diseases can exacerbate physical changes, too, including weight, hair loss, agility, and, under the right circumstances, a couple of zombie-like eyeball sockets.

As much as I may look like a zombie I cannot dance as well as Michael Jackson’s zombie character in Thriller.

Too bad.

Today is the first day of a new year. It’s also one day past last year. Officially, I’m living on borrowed time. Neurologists use an assessment score to determine approximately how long a patient with ALS can expect to live.

Some with ALS live for over 10 years. Average life expectancy is two to five years from disease onset and diagnosis, although somewhat less with respiratory onset ALS.

It’s not a perfect science.

My life expectancy was approximately six months. Six months and one day ago. Or, put another way, yesterday. That means I’m living on borrowed time today.

What does that mean?

to continue to live past the time one was expected to die and be likely to die soon

One extra day isn’t much.

I say that because as much as I enjoy my wife’s smile and our grandkid’s antics, I’m tired beyond any level ever experienced. Whatever is beyond tired, I’m beyond that. My body aches and refuses to do what I ask. My heart is heavy and my spirit weak.

But I’m still here.

I’m just living on borrowed time.

One of my favorite movies is Indiana Jones and the Last Crusade. One of the best scenes in the movie is where the old knight, guarding the Holy Grail, told the Nazi sympathizer to “choose wisely” from the many grails before him.

He did not. He “chose poorly.” He died.

When we become ill with a debilitating disease, from beginning to end, we are presented with many choices. Tests and results. Doctors and insurance. Medicines and caregivers.

Choose wisely.

It is important to know what medical tests are and what their results mean. It is important to know that doctors do not always agree on a best course of action for a patient. It is important to know that insurance has limits, that medicines have unwanted side effects, that caregivers do not always care.

When presented with choices it makes sense to listen carefully, ask questions, do research, ask more questions because your health is at stake.

Here is a personal example.

Reluctantly, I ventured to ER, a local hospital’s emergency room, on two occasions. Once before the ALS diagnosis and once shortly afterwards. Why? Breathing difficulties.

During the first ER visit, blood tests indicated higher than normal CO2. Carbon dioxide. Nothing else. That was a clue that was ignored. My third neurologist then recommended a trip to the Mayo Clinic.

During the second ER visit, a CT scan indicated that arterial blockage might be responsible for my breathing difficulties. LAD. Left anterior descending artery. The widow maker. Five doctors reviewed test results. Three doctors recommended an immediate angiogram to remove the blockage. Two doctors overruled them and said to wait to meet with my cardiologist (who had previously determined my heart was in excellent shape for my age).

What happened? Test results can be viewed differently by doctors.

Based on what appeared to be a blocked artery, one of the doctors prescribed medicine to reduce my cholesterol. Without doing a blood test to determine my cholesterol (perfect; triglycerides, too). I did not take the medicine.

In the end, my cardiologist said the only way to determine if LAD artery is blocked is… insert drum roll here… an angiogram. I had the angiogram and it showed no blockage. The breathing problems persisted.

My original pulmonologist recommended a tracheotomy to improve breathing; a drastic and invasive process. That recommendation was made without an examination of current breathing capacity.

See a problem? I found another pulmonologist.

Another doctor recommended BiPAP machine settings that were too high and caused additional breathing problems. How is that possible? A diagnosis based on incorrect information from test results.

Test results can lie. They are not perfect.

“Choose wisely” is a simple recommendation that requires diligence from the patient. Some doctors do not like questions from patients. Others are willing to explain everything in sufficient detail. In the end, the patient is responsible for what course of action to take.

Choose wisely.

The choices are yours to make. The results are yours to keep.

You may have heard the old saying “Perspective is everything.” Is it? It can be. One can argue for or against nearly any perspective, thought, idea, or even a set of facts. The ability to argue forcefully does not make what is wrong turn magically into what is right.

Perspective matters, but perspective is not everything. Sometimes a perspective is just wrong.

Unfortunately, we humans have the ability to argue one side or another (sometimes more than one side) with ease and convenience, and far too many of us don’t bother to think beyond the words we adopt to support our perspective.

What changes the perspective?

Logical consistency, factual accuracy and some degree of emotional appeal to the audience are elements in debating, where one side often prevails over the other party by presenting a superior “context” or framework of the issue. In a formal debating contest, there are rules for participants to discuss and decide on differences, within a framework defining how they will do it.

That’s how it’s done on a formal basis but few us do much more to defend or denigrate a perspective than raise our voices or snicker at someone with a different point of view.

Doctors conduct tests to determine a specific illness which can then help them to chart a course of healing or comfort. They develop an experienced and factual perspective on your illness and then determine a course of action.

Sometimes they are wrong. Perspective is not everything.

After many dozens of tests, half a dozen doctors have developed a unified perspective that I have ALS. Amyotrophic lateral sclerosis; a debilitating, devasting disease with no cure. Time will tell if they are correct but only when I die.

Still, I find some doctors willing to try a few long-shot tests to see if the visible and obvious symptoms are indicative of something else instead of ALS; perhaps something not deadly, something with a cure. Yet, there are other doctors who prefer the wait and see approach and are not willing to do anything. Some doctors won’t even bother to consider alternative perspectives regarding an ALS diagnosis.

To me, thinking outside the box is a good perspective.

Life expectancy for someone with ALS ranges from two to six years. A small percentage may live longer but typical symptoms are debilitating over that span and most with ALS die from respiratory failure.

Recent news of a drug test:

The drug is not a cure, but it may help slow the inexorable disability caused by ALS, which rapidly destroys the nerve cells that control the muscles that allow us to move, speak, eat and even breathe.

Researchers are working to slow down the disease progression in the hopes of finding a cure.

Hope can be fleeting. Imagine having a disease with a prognosis of living for six more months, then to read about a potential cure in the last trial stage; a medicine likely to be released in six months.

Timing is everything.

The multicenter, randomized, double-blind study is the second step — a phase 2 trial — in a three-step process required by the Food and Drug Administration for drug approval. In a double-blind study, neither the patients nor the researchers know who is receiving the drug. If a phase 2 study generates positive results, the FDA typically requires a larger and longer phase 3 trial.

See the problem?

Hope is on the horizon. Rather, hope is just over the horizon for those who have less than a horizon to live.

Neurologists use an assessment scale to determine how ALS has affected someone and a score determines approximately how much longer they will live. The scale starts at 48 points. Those in the study had reached 36 points so debilitation had already begun.

Patients taking the medication lost an average of 2.32 points less than those receiving placebos, a 25 percent better functional outcome.

My progression score already is in the 20s and moving quickly so I look at such drug test results with a mixed plate of emotions.

I’m thankful progress is being made, pray that some will benefit, yet I understand the nature of such testing procedures. They take time. Time is exactly what those with ALS do not have. I’m saddened to realize that many ALS patients do not have enough time left to live to benefit from a medicine that may not get to market until long after they have died.

What happens when an unstoppable force meets an immovable object? What gives? Something must, right?

That is known as the irresistible force paradox.

The unstoppable force paradox, also called the irresistible force paradox, shield and spear paradox, is a classic paradox formulated as “What happens when an unstoppable force meets an immovable object?” The immovable object and the unstoppable force are both implicitly assumed to be indestructible, or else the question would have a trivial resolution.

If there is a fly in the ointment then there is a flaw in the argument.

The paradox arises because it rests on two incompatible premises—that there can exist simultaneously such things as unstoppable forces and immovable objects. The “paradox” is flawed because if there exists an unstoppable force, it follows logically that there cannot be any such thing as an immovable object and vice versa.

Is that paradox not akin to curing the incurable?

ALS is considered an incurable disease. Motor neurons die. Muscles stop working. The body dies. That seems simple enough. There is no cure.

Or, put another way, there is no known cure. Until there is a cure, ALS is incurable. The way the story goes is simple. If you are cured of ALS then it was not ALS.

Use Google as a verb and Google “ALS cure.” The first page of results will be explanations of ALS and how symptoms exhibit themselves and how they can be treated. After that, Google becomes a free for all for snake oil salesmen to bang their drums for cures; everything ranging from apple cider vinegar to stem cell therapy.

ALS remains incurable. Until there is a cure and the paradox is broken. Then the incurable becomes cured.

I’m waiting.

Late last year my wife and I decided I needed a new suit. We went to the Men’s section at Macy’s and found three suits that looked good but did not quite fit. Since then we have been on the ALS roller coaster with a visit to Mayo Clinic in the dead of winter and the COVID pandemic closures.

No new suit for me.

First, my weight is down another 25 pounds from a year ago. Second, there is no place to go where I can wear a suit (even our Kingdom Hall meetings are held on Zoom). Third, I plan to be cremated so what good is a suit?

No new suit for me.

Yet, the advertising on Macy’s website is enticing.

Kenneth Cole Reaction Techni-Cole Slim-Fit Suits features a pant with a pre-tailored 32″ inseam. Just find your size and you’re good to go…looking your best.

Is Kenneth Cole someone special in the suit business? I’m asking for a friend.

Slim-Fit? I can do that.

“Techni-Cole?” Nice play on words.

Billy London was another suit brand that did not seem familiar.

Slim fit through the shoulders, chest and waist with higher armholes and slimmer sleeves; Slim fit pants sit slightly below the waist; slim fit through the hips and thighs with a straight or narrow leg opening

I got it. Slim, slim, and slimmer. It’s as if someone is trying to tell me something but nobody dares to call me Slim.

My take?

No new suit for me.

Have you ever felt that today is exactly like yesterday? That maybe you’re stuck in some kind of time loop where each day simply repeats itself over and over and over and you’re the only one who knows about it?

That’s Groundhog Day.

[Bill] Murray portrays Phil Connors, a cynical TV weatherman covering the annual Groundhog Day event in Punxsutawney, Pennsylvania, who becomes trapped in a time loop forcing him to relive February 2 repeatedly.

As it was with Bill Murray’s character, each day of my life seems to be a repeat of the day before. Wake up, go to bathroom, go to living room, drink water, then drink juice, take bath, brush teeth and shave, towel dry; the rest of the day may vary in details, but Groundhog Day began the same way every day, too, and changed as the day went on.

At 6:00 am the alarm went off and Sonny and Cher blared I Got You Babe from the clock radio. Every. Single. Day.

Shaving is like that. The mundane has become the memorable. It feels as if I am trapped in a time loop and forced to begin the day the same way every day, too.

We don’t know how many Groundhog Days Phil Connors lived. A year of them? 10 years of them? We do know that he could change each day only to have the next day, starting with the alarm clock at 6:00 am, begin again the same way.

Connors’ cynicism caused him to end his life many times; only to be resurrected at 6:00 am again and again. His life changed only when he came up with an objective to look forward to each day (chasing after newfound love interest Andie MacDowell).

Do you see a few key ingredients to life in there? Objective, purpose, a reason to live?

What if you’re dying of an incurable disease that sucks life from its victims and, while doing that, also depletes the reason to live?

Phil Connors dreaded the 6:00 am alarm clock until he found a purpose in life (Andie MacDowell) and his daily resurrection gave him the energy he needed to overcome Groundhog Day and live a life that helped others as it helped himself.

My life today is a personal Groundhog Day. The morbidity of ALS will end and be replaced by a resurrection to a better life. I look forward to each day because one of them will become better than the day before.

What do you drool over? Drooling has a number of meanings. It even has another name.

Sialorrhea:

The unintentional loss of saliva from the mouth, occurs in up to 25% of patients with motor neuron disease

Most of those with motor neuron disease are afflicted with ALS. We drool. And not in a good way.

Drool:

1a : to secrete saliva in anticipation of food
The dog hears the bell and begins to drool.
b : to let saliva dribble from the mouth.
a drooling baby

2 : to make an effusive show of pleasure or often envious or covetous appreciation
drooling over their new car

3 : to talk nonsense

I like #2 above. I drool over my wife because she has captured my heart and kept it a slave for nearly 40 years.

I am often accused of #3 above.

Drooling for ALS patients is different.

It can significantly affect quality of life. It is caused by dysphagia with inability to swallow secretions because of tongue spasticity; weakness of face, mouth, and pharyngeal muscles; and loss of oropharyngeal coordination and function and is not due to increased production of saliva. There are 2 main types of saliva produced by the 3 major salivary glands: serous saliva, which is thin and watery and is mediated by cholinergic receptors, and mucoidal saliva, which is thicker and more viscous and is mediated by beta-adrenergic receptors.

That may be more than you ever cared to know about drooling but suffice it to say I drool more now; thanks to my wife and to the effects of ALS.

Opportunities for a do-over come to most of us. That’s what divorce is all about. Regardless of the consequences, divorce gives a couple an opportunity to move on in life.

The do-over.

do-over
: a new attempt or opportunity to do something after a previous attempt has been unsuccessful or unsatisfactory

“Art, unlike life, permits do-overs: the illusion that one can get things right with craft and persistence.”

“As for his pitch, Keaton’s first try was in the dirt. He requested a do-over and fired one right down the middle.”

Life trains us for do-overs. You fell down? Get up. You got thrown off the horse? Get back in the saddle again. You didn’t finish the race? Finish the next one. You failed? Keep trying.

You get the idea, right?

Unfortunately, life is such that those nearing death do not get another do-over. Without a cure or improvement in symptoms, those with ALS are on a rapidly progressing downhill road to death. There is so little time left that opportunities for a do-over are few and far between.

I was in good physical shape before my diagnosis. Now I’m not. Sorry. No do-over. I have relatives who were once close but have chosen to stay away. No do-over. I have regrets about not living life better while trying to find a diagnosis or cure. No do-over.

We get do-over opportunities throughout life but there comes a time where there is no longer time for a do-over.

If you have time now and a need to do something to improve your life, to help someone else, or to repair a broken bridge, do it now. Tomorrow comes quickly and may not have the same opportunities.

What are you willing to bet on a long shot? What are you willing to risk when the reward is great but unlikely?

long shot

1 : a venture involving great risk but promising a great reward if successful, also : a venture unlikely to succeed

2 : an entry (as in a horse race) given little chance of winning

3 : a bet in which the chances of winning are slight but the possible winnings great

A medical diagnosis where all doctors involved make the same diagnosis seems like the opposite of a long shot. I have visited dozens of doctors with a range of differing specialties and the end result is the same.

ALS.

What if this is not ALS?

The process of a differential diagnosis is a process of inclusion and exclusion, but it’s not perfect science. Sometimes doctors make a wrong diagnosis. About 10-percent of all those diagnosed with ALS have something else instead.

So, if not ALS, what?

It could be some other motor neuron disease but I was tested for all of those, including the genetic varieties.

Move along. Nothing to see here.

What else?

Long shots. There are many diseases which have similar symptoms and characteristics as ALS. Here’s one.

Glycogen storage disease… an autosomal recessive metabolic disorder

Say what?

[It]damages muscle and nerve cells throughout the body.

It’s also known as Pompe Disease and some symptoms look exactly like ALS. What causes it?

an accumulation of glycogen in the lysosome due to deficiency of the lysosomal acid alpha-glucosidase enzyme

Say what?

See? A long shot.

For me, the risk of the test to determine Pompe Disease is high. The reward is low. That’s not a long shot. It’s the opposite. Those with late onset Pompe Disease usually are in their teenage years or 20s and 30s.

The treatment is less effective for those my age.

High risk. Low reward.