One Father's Extraordinary Journal of Living Longer with ALS
A Tough Couple of Weeks

During my ten years of living with ALS, I have had some difficult days both physically and emotionally. Periods of illness (beyond the symptoms of ALS) have rarely lasted more than a day or two. For the past two weeks however, I have been struggling with symptoms of hypothermia that have taken my normally cold-sensitive body to new levels of chills. No one in the circle of medical professionals, who regularly visit me, seem to have much in the way of suggestions for cause or treatment beyond what I have already figured out for myself. Compounding the situation is what appears to be a continued deterioration of my epiglottis, making keeping food and water out of my trachea an increasingly difficult process. As a result, I am experiencing weight loss, dehydration, and coughing fits that can last for more than a day. After winning a battle to clear my throat of misplaced food particles, the battle often resumes with the next meal. All of this is very draining and saps my strength and energy for operating my wheelchair, toothbrush and computer.

In previous posts, I have written about the power of choice and the human will, the concept of surrender, the importance of a positive outlook, and other lessons I have taken from my illness. During this recent challenge, the strength of my will has been tested and the wisdom of my choice brought into question. There are moments as I write these posts when I ponder how many readers find me inspiring or just full of myself. If I am anything less than honest about my struggles as well as my victories, then the guidance that I try to offer on handling adversity becomes less meaningful, if not hollow.

So, I want to level with you that the weight of current difficulties has been extraordinarily challenging. They have generated thoughts that have not pierced my consciousness for years. I have found myself thinking on several occasions, “I am going to die”. Please don’t misunderstand. I have not given up, as these thoughts are quickly followed up by the thought, “Someday”. The point is that the battle between positive and negative thinking has been fiercer and more frequent of late.

One step that I have been considering more strongly than in the past is the idea of a feeding tube. Beyond the psychological blockage of having an artificial device sticking out of my body, I have three medical issues that I need information about to make a decision. First, I am concerned about the risk of infection from long-term use. Secondly, I am concerned about the possibility of regurgitation, which could pose a greater risk of aspiration than continuing without the tube. Finally, I need to know if it is possible to continue a vegan diet using smoothies and juices through the tube, which would provide far better nutrition than the formulas normally recommended. If any of you have the experience, either direct or indirect, to offer insight on any of these issues, I would greatly appreciate hearing from you.

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About a week ago, I was visited by a new friend with ALS. He came with his wife and brother-in-law (his primary caregivers) to seek advice on dealing with the illness. It was interesting to compare the differences in our conditions. While he has been living a confirmed diagnosis for three years less than I have, his progression is in some ways worse than mine while in other ways not as severe. On the plus side, he still has modest movement in his legs (although not enough to support his weight), and he does not require 24/7 breathing support. On the downside, his speech is very difficult to comprehend, there is no movement in his arms and hands, his weight is very low, and he constantly battles sadness.

In the short time since our meeting, I have exchanged several emails with his wife clarifying suggestions I had offered. These exchanges caused me to reflect on the vast array of remedies and procedures with which I have experimented over the past eight years to arrive at the protocol which is currently keeping me stable and generating modest improvements. Many of these experiments have drawn amazed reactions from friends who could never see themselves employing such tactics – things like a raw vegan diet, lemonade cleanses, coffee enemas, and colema boards (a variation of colonics) to name a few. I have had conversations with several PALS (people with ALS) who came to pick my brain on what has worked for me. Few, however, have committed to the changes or procedures I have recommended, which brings us to the issues of choice and will.

These topics came into very sharp focus for me about four years ago, when an alternative health practitioner named Tom Woloshyn came into my life. One of the first things he asked me was, “Do you want to live or do you want to die?” I was startled. It seemed obvious. I had taken it for granted. Confronted with Tom’s question, I had to ask myself to what lengths I was willing to go. Suddenly it became clear that the potential for success was highly dependent on what I really believed and was actually committed to doing. Tom helped me realize that if I was to have any hope of recovering from ALS, I had to decide whether I truly wanted to live, and how much. In discovering the depth of my will to live, I found the power to choose to employ healing practices to which most people would react with “Are you kidding me!?”

I sometimes ponder which comes first, the strength of will or the power to choose. It seems to me a bit of a chicken and egg question. The choice to do what is necessary to work through a difficult challenge can certainly stimulate the will to succeed. At the same time, the will to succeed, no doubt, drives the choices we make. Which one comes first is an interesting debate for philosophers. In pragmatic terms, the bottom line is that both are required for success. This is not just an issue for people with serious illnesses. People who live in a mentality of wishing, hoping, and wanting to lose ten pounds never achieve their goal until they commit to a change in behavior. The same holds true for the unemployed in a bad economy. Those who succeed in finding jobs are most often the ones who believe in their ability to do so, and are committed to doing what is necessary to achieve their goals.

What struggles and successes have you experienced that demonstrate the power of will and choice?

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