Monday, January 3, 2011

A Tubing I Will Go!

In my last post, I described some of my reservations about getting a feeding tube. A few readers responded with helpful information, and I am grateful for their input. Since that post, however, I discovered an even greater concern in consultation with a doctor who was prepared to perform the procedure on me. The new concern was the possibility that, because of my limited breathing capacity, I might wind up with a tracheotomy, a situation that I had once feared more than death. Now, faced with the more imminent possibility of death, and not ready to go, I was stealing myself to the possibility, and hoping for the best.

Then, last week I spoke with a surgeon who has been successful at performing this operation on ALS patients for 10 years with a procedure that he designed. It is less invasive than what others are doing (nothing down the throat), and he has never had to trache a patient. We are planning to have the procedure done on January 19. It’s a tough call to give up tasting, chewing and swallowing food, but I won’t miss the hours of coughing and gagging over my meals, and trying to pull food particles out of my trachea and bronchial tubes with a cough assist machine.

There is a glitch, however, and it’s a big one. Once I have this procedure, insurance will no longer cover hospice. This is a good news/bad news scenario. While I would just as soon be out of hospice after 5-1/2 years, it means the loss of a lot of resources. There is equipment like my hospital bed and breathing equipment that insurance will still cover, but not at 100%. There is support staff like my social worker, Liz Cohen, who has been very helpful over the years. Most importantly, I will lose 20 hours a week of assistance from my friend and aide Lloyd Smith, who has been a loyal and caring companion for 5 years. His loss is both an emotional one and a potential financial puzzle, because we can’t afford to replace him, and that will put an additional burden on my live-in aide, Jimmy. So in addition to the emotional and psychological challenge of learning to live with a tube hanging out of my stomach, we also have some financial issues to grapple with. Another adventure begins in my continuing saga of living with ALS!

Each time this disease presents me with a new challenge it tests my resolve to stay focused on my advances vs. my setbacks, and the achievement of an ALS recovery. Every once in a while the challenge is so significant that I have to work extra hard at staying in the moment, and remembering all that I have to be grateful for. This is one of those times. One of the things for which I am deeply grateful is that my readership continually reinforces the notion that somehow the sharing of my nightmares and how I handle them helps them with their own. Please keep the comments coming to let me know whether this blog is continuing to fulfill its purpose, and thanks for reading.


  1. I'll be praying for a smooth transition! This sounds exceedingly difficult- thank you for continuing to inspire and move us with your stories of perseverance.

  2. Sending you lots of positive vibes and thoughts for the 19th!

  3. Dear Joe,

    Your blog is very inspirational and a lot of help for people with ALS. My mom was diagnosed with this disease 8 months ago and the story of your strength and determination is one very motivating account.

    It is quite a shame that no one wants to publish your book yet because I am sure a lot of PALS could profit from it.

    Would there be any way to get a copy of the book? I would gladly pay for it, just hoping that some of your past experiences could help my mom before it is too late. Please send me an email or private message if that is possible.

    Keep strong and don't give up the fight!


  4. Joe,
    Fellow PALS praying for you. Just decided to add 4 tables spoons a day of organic coconut oil to my regimen. No downside and some solid upside. Google Coconut Oil and ALS.

    Stay strong. BTW, check our Edward Cayce and Wet Cell Battery therapy. He is amazing for someone who has not been with us for over 60 years.