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.

Comments (6)

A few days after I wrote my October 23rd posting, “An Unfortunate Case of Myopia”, a friend of mine contacted me on Facebook to ask how one would go about encouraging the sources of research funding to channel some of that money to investigating effective non-traditional treatment for ALS. At the time, I did not have a very good answer, but within a few days, as if on cue, one was provided to me. Here is what I wrote to him: You could contact ALSA and MDA and suggest that they support Dr. Craig Oster’s efforts, and/or contribute to his campaign to develop research on holistic healing for ALS directly at

Dr. Craig Oster has been living with ALS for 16 years. By maintaining a positive mindset and an unshakeable conviction that he is recovering from ALS, he has made some incredible progress with his healing. He has regained muscle (a feat claimed by neurologists to be impossible), and is currently able to bench press over one hundred pounds. His holistic program includes a focus on mind, body and spirit, and is worthy of consideration for anyone interested in improving their wellbeing, not just people with ALS.

Similar to my own experience, Dr. Oster has found it difficult to interest mainstream doctors in anything other than pharmaceutical treatment of ALS. Convinced, as I am, that he has found successful alternative means of dealing with this disease, he has pulled together a team of professionals and people with the illness to begin his own research efforts on holistic treatment of ALS. His website already includes stories of several other people who have made progress in combating this disease.

Dr. Oster’s efforts provide hope for tens of thousands of people who have been given a death sentence by the mainstream medical community bound in the belief that their paradigm is the only credible one for healing. From a broader perspective, however, this man serves as an inspiring role model of courage, perseverance, and focused determination. Are there people like this in your life? Please share your stories.

Leave a Comment