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Five Years In

I am aware that most of what I smear on the walls of my blog is of little or no interest to most readers who exist outside of my own head. Inside of my head, crossword puzzles, book reports, my music collection and random silliness are quite popular and always well-received. My infrequent posts on the subject of my dalliance with ALS seem to be exceptions to these rules. They are more popular outside of my head than inside of it.

This post will pander to my extra-cranial audience.

Peanuts comic

Tomorrow is the fifth anniversary of my ALS diagnosis. Today marks 4,381 days of not dying from this disease. Every one of these days has been filled with its own beauty–some more than others, maybe, but every one unique and worth celebrating.

According to the ALSA’s Facts You Should Know and other sources, I have surpassed the three-year (from diagnosis) average survival and am among the 20% of people with ALS (PALS) to survive as long as five years.

I share Snoopy’s philosophy.[1] I know I am luckier than most with this disease. Yes, it is coming to get me. But not today. I am very thankful for what I have been given so far–55 years of life and counting. I’ve lived long enough to witness the verification of one of Albert Einstein’s most interesting and important predictions! I plan to enjoy whatever time I have left to the best of my abilities.

So what’s new?

I got to ride in an ambulance! That’s new. I will include a brief summary of what is going on ALS-wise with me five years into it, but first a long account of my recent spot o’ bother …

I know that what I write here about my experience sounds mean and ungrateful. Really, I am thankful for the quick response and kindness of our local emergency personnel. I was in good hands, though I was unable to appreciate it at the time.

On the evening of Friday, January 8, Joann and I saw the Timberwolves play the Cleveland Cavaliers at the Target Center. At some point during the game, I turned to Joann and told her I was having an odd pain in my chest. It was not related to the in-progress beat-down of my favorite team. I’m used to that.

I didn’t give it much more thought. Fast forward a few hours to me in bed having more than my usual difficulty sleeping. I had had my nightly bowl of oatmeal with the “secret ingredient” that is usually so helpful with my spasticity and (mild) insomnia. One relevant side effect of this concoction can be paranoia (though for me, giggling is a more frequent problem).

911 graphicAt about 3 AM I found myself wide awake with more than my usual level of cramping (related to spasticity, but distinct). Along with it–a part of it?–was a recurrence of the pain in my chest I had noticed at the game. For about a half-hour the pain got worse and I felt–imagined?–it spreading to my left arm. I thought maybe I was having a heart attack, but convinced myself I was just paranoid. I thought that if I changed positions, surely the pain would go away. So I woke up Joann and asked her to help me sit up.

I sat up only to find myself very dizzy and quite nauseous. Now I knew I was not imagining this. And after all, I felt, why shouldn’t I be having a heart attack? My cholesterol and triglyceride numbers are insane. This is due to my lack of exercise and my diet (which consists of approximately 50% peanut butter M&Ms). I am told by my ALS clinic team that it is very important I keep my weight up. When I express concern about my cholesterol, I am told not to worry about it, the ALS will get you first. But in the back of my mind I expect that if it doesn’t soon, a heart attack will.

So I told Joann to call 9-1-1. A year from now when I will likely be struggling mightily to eat, breathe and communicate, I hope I will have the courage to let a heart attack take its course. But not tonight, I thought.

So she called. I lay flat on my back on the bed thinking, “I’m dizzy, I’m nauseous and my chest hurts. But it doesn’t hurt enough to be heart attack, surely. Too late now, though, wheels are in motion.”

Within minutes, the first responder arrived. A Ramsey County Sheriff officer. A friendly and talkative guy. I’ll call him “Barney.” Seemed to be from Fargo, if you know what I mean. He told me right away, “I can’t do anything for you, but help is on the way.” He felt my arm and forehead and noted that I was “clammy.”

Ambulance graphicMeanwhile our dog was going crazy. On instructions from the 9-1-1 operator, Joann had shut Jazzy up in another bedroom. This confinement along with the parade of responders now traipsing through our house at 3:30 AM wasn’t calming her down. Her barking sounded like a pack of large German shepherds.

So I lay flat on my back struggling to breathe, imagining a clown car full of Marx-Brothers-as-cops emptying into our house as Barney tried to engage me in a friendly conversation. He asked at least twice if something about the Timberwolves game upset me. I couldn’t really speak, but he seemed oblivious. All the while more and more people arrived. (At one point, there were nine sheriff, fire department and ambulance personnel in the bedroom with us.) Barney introduced them and each greeted me cheerfully. I grunted occasionally in response. Barney knew all of them and didn’t fail to ask each about family, fishing, job satisfaction, the weather and everything else.

The ambulance’s two paramedics checked me out pretty thoroughly and decided to take me for a ride. This involved two transfers: from my bed to my wheelchair and from the wheelchair to a stretcher. Clearly, none of the responders deal regularly with ALS patients. I didn’t know which was more likely: would they drop me, or would they rip my arms out of their sockets? At one point I asked them to let Joann transfer me. No, no, they had this, I was assured.

They didn’t fumble me and I soon found myself in the back of an ambulance where I passed an EKG with flying colors. By this point I was pretty sure I had made a bad mistake calling for help and that I was certainly not having a heart attack. (When I noticed that one of the paramedics was quite attractive, I knew I was okay.)

A few hours in the hospital confirmed it. I would live. I hadn’t had a heart attack. Diagnosis: dehydration, painful chest muscle cramping and a dash of paranoia. During my stay in the hospital, I did learn I am unable to urinate effectively into a receptacle held by my wife while I am supported by two nurses precariously on the edge of a too-high hospital bed. So now at least I do have that valuable information going for me.

I am now a known heart attack faker.

Other than that one night, how’s it going?

That anecdote about my ambulance ride is only peripherally related to ALS. It is related though, because I would not be in this kind of shape and I would not be paranoid about having a heart attack if not for the disease.

Direct effects of this lousy disease are piling up. This does not contradict what I said earlier about being one of the lucky ones. I am and I don’t forget it. Too many people whose acquaintances I have made over the course of the past five years in ALS forums and locally have succumbed to it. It seems as if almost all of the members of the “class of 2010/2011″ are now gone. Keep that in mind as I enumerate my complaints.

Operation game figureMy ALS manifested itself first in my left hand and arm. They are both now almost entirely useless. I can swing my arm with great effort to move it on or off of an armrest. Otherwise, it serves only to provide my left shirt sleeve with something to do.

Early on I was told that my right hand and arm were about one year behind my left. That seems to be a pretty good approximation. If my right is more functional than my left was a year ago, it is only because I am strongly right-handed. For the most part, I have not used my right hand for anything other than moving a wireless mouse, reading a Nook, and operating my wheelchair’s joystick for about a year. (I can’t press buttons on a mouse, so I use foot-operated switches.) Right now I am increasingly having difficulty shifting my hand onto either mouse or joystick. It doesn’t seem that I will be doing so in six months. I hope I am wrong.

My breathing is holding up pretty well. This is a good news/bad news situation. I would rather it not be the last thing to go. I don’t anticipate I will opt to be trached and live defendant upon a ventilator. (I’m not quite ready to say never at this point.) If I were left with the ability to speak and the use of at least one hand, I might feel differently. Right now with my breathing at about 75% of expected capacity, I only use a BiPAP for a few hours a night while sleeping.

The whizzinatorI don’t walk and haven’t taken even a few steps on my own for almost a year now. I can stand on my own to help with transfers (Joann or my caregiver use a lift belt to keep me off of the floor). Critically, I can stand with my legs pressing back against my power wheelchair while I urinate. As long as I can do this, I am able to spend a few hours alone at home. (A catheter and a bag would work also, but I’m not ready to do that to my junk just yet. I prefer using the whizzinator pictured here.)

Other than “bobbing for M&M’s” I haven’t fed myself in over a year. Even if I could hold a fork, I can’t lift my arm. Atrophy of my tongue makes chewing difficult and exhausting. My wonky, spastic uvula is increasingly causing me to choke on foods and liquids. I avoid some foods and am increasingly modifying the texture of what I do eat. In March or April, I will be considering the installation of a feeding tube port.

Most concerning to me at this point is the effect my weakening tongue and lips are having on the intelligibility of my speech. My diminished lung capacity, relatively minor as it is, is also a problem. I am becoming increasingly difficult to understand. And I do like to talk (as you may be aware).

One thing I have learned over the past five years is that no loss of capability is as a bad as the anticipation of it. I used to fear losing the ability to walk or to use my hands. I can’t recommend either, but I have adjusted readily and–you may believe it or not–neither has been over-difficult. Each loss leads to a “new normal.”

Will the loss of my voice prove to be just another quickly-assimilated new normal? What about when coupled with the final loss of use of my right hand? Even when contemplated in the light of my experience with incremental losses, this seems daunting. Which is to say the very least.

Anything important to say?

Not really. Somewhere along the line maybe I will try to share what this experience has taught me. Right now, I can’t say that I have had any epiphanies. No spiritual transformation–I am comfortable where I have been all along in this respect.[2] I don’t fear my own death, but I am saddened to know it will cause pain to those closest to me. I wish I could spare them, but I know I can’t.

Unimportant things? You bet. As long as I can dictate and/or negotiate an on-screen keyboard I will keep posting nonsense here and elsewhere. In fact, I have a crossword puzzle I hope to publish here sometime next week (and I have another stuck in limbo that I expect to publish here next month).

I can share this important video (I recently shared this on Facebook as well). Here is a PALS with something real to say. I have signed the petition (and several others) to urge the FDA to create a new paradigm for the investigation of potentially important therapies for ALS and other diseases.

See Tomorrow’s Cures Today (tomorrowscurestoday.org) for more information and to see how you can help to make a difference.

Recent ALS Bites:
12/17/2019 Steve’s Emergency Communication To-Go
02/28/2019 Unhappy Anniversary
05/12/2017 The Eyes Have It
08/04/2016 YFALS National Corntoss Challenge
07/18/2016 Scopolamine Blues

   or see the  Complete ALS Bites


  1. I am almost certain Snoopy was not the first to say this. In fact, I am skeptical of his ability to speak English. This bit of wisdom sounds like a koan from Zen Buddhism, but I am unable to track its source. [^]
  2. Which is to say that I am not expecting to transition to some metaphysical “higher plane,” no heaven, hell, paradise or Tir na nog. [^]

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