Monday, December 20, 2010

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.


  1. Inspiring... Nothing short of inspiring!

  2. Never doubt you make a difference in everyones life that you touch and, through them, beyond.

  3. Dear Joe,

    Have you researched the connection between ocular light (light through the eyes) and health/ALS?

    You may want to look at my website

    Best regards

    Nikolaj Holtermann in Denmark

  4. Joe,
    It may help you to get started in my Healers of ALS Project Team. I believe that there is much hope for you to strengthen the use of your mind in healing.


  5. Dear Mr Wions,

    My name is Allison and I know your daughter from the University of Hartford (It feels like just yesterday I met her... I can't believe how much time has gone by already). I have only seen her a couple times since college, but I recently got to see Julie at her bon voyage get together in NY before her amazing adventures to CA. Julie is an amazing, talented, and sweet young woman which I'm sure is only the beginning of what you think of her. After reading some of your posts and what not, it's no wonder she is the way she is. Her smile is contagious and her spunk for life is always a welcomed sight. :-) I think your outlook on life and the way you try your best to lead a positive life is amazing. I'm sure it's a source of strength for many of your followers. My aunt is a personal trainer/life coach/nutritionist and she is the same way. In fact, I was just at her house and I saw tapped all around the edge of her mirror, colorful note cards. Each card had a positive life affirmation written on it; a statement to help her lead a positive more productive life for herself and those around her. They were put in a place where she sees them everyday to be reminded of each and every one of them. It is quite late and I must be going, but I wanted to send a hello and also some information I have that may help you. I have worked with children with special needs and recently worked with a little boy who has CP. He has a tube in his stomach in which he receives some of his nutrients through. He is now being fed some food by mouth as well. I may be wrong, but I believe that he had a surgery done a while back that stops anything (food) from coming back up from his stomach so that he couldn't aspirate. I think they did this so he can’t vomit or anything. We have to vent his stomach and get the air out since he can’t eliminate it through burping. I have no idea if this is something that may be helpful to you with your decisions about a feeding tube and aspirating, but it popped in my mind when I read your post. If you think you might want to know more about it, let me know, and I would be more than happy to ask the family more about it and get you more information. Leaving you with prayers that you find the strength and guidance in some of the decisions you are facing and I hope the New Year finds you lots of warmth!


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  7. Hi Joe,

    I have a great literary agent and am happy to see if yours is the type of book she would be interested in. If you send your proposal and/or contact information to, I'll see it gets over to her.

    I will also pass this blog along to a few friends in the vegan health community to see if they can offer any guidance.

    All best,
    Rory Freedman