I apologize for the lack of new posts since our return from Alaska. One of the reasons is that composing my posts has become much more difficult. My fingers no longer work well enough to operate a keyboard.

I have been making a lot of progress in the past month. For someone with ALS, this is not necessarily a good thing. In mid-September, the first respiratory assessment since my diagnosis showed that my breathing function had declined from 90% to 60%. A few weeks later at my first big clinic, it had declined further to 50%. This is not good news.

I now have two machines that help me get through the day and night. One is a BIPAP that helps push air in and draw it out of my lungs. The second is a cough assist machine that inflates my lungs enough to allow me to cough and/or blow my nose, two activities that I can no longer perform effectively on my own. The first one I call Virgil; the second Horace, both named after college schoolmates. Whimsical, but effective.

I use Virgil when I sleep and, on occasion, through the day. Eventually, I will need his assistance more and more as my respiratory capacity continues to diminish.

My mobility has declined at a horrific rate since our Alaska trip. I am no longer able to stand unassisted: even assisted, my legs collapse within seconds. Every facet of my life now requires assistance, from getting around in the house to scratching the occasional itch. My arms are rapidly becoming useless appendages. Fortunately, my left fingers retain enough dexterity to operate my power wheelchair, a device that I choose to call Darth Rider.

I am no longer an independent being. I have thoughts but can no longer act on them without assistance. I feel somewhat estranged from the normal world my fellow humans inhabit for this reason. I feel as though I have one foot in this world and another in the next.

At night, when I sleep, I feel my muscles twitch with their mysterious fasciculations. I feel, at times, as though I am on fire with electrical energy. It is like a symphony.


  1. Your words, as always, provide us a beautiful connection. Thank you so so much for making the time and finding - spending on us - some of your precious & increasingly limited energy to share and keep us all a part of your world as much as you are able. You are loved, and valued and continues to amaze ❤️ ❤️ ❤️

  2. Morrie Schwartz was apparently worried about the final indignity: needing someone to wipe his ass. But if Mitch Albom's tribute to his professor is to be believed, Morrie easily found a different sort of dignity that came from relying on people—on accepting the warmth and care that they had to give.

    Every path has its own set of challenges, I guess. I'm glad that, as you face these obstacles, you have people there to hold your hand.

  3. Thank you for having the courage to share what you are going through. We are all headed in the same direction, but there is a morbid fascination we seem to have with those who seem to be moving faster towards the jumping off point. I'd like to apologize for that, but it is something we all have.

    As an aside, I read your updates with a bit of a smile. You surely know the old joke about the guy falling off a building and shouting through an open window on the way down, "So far so good". Of all the people I know, you are one of the few who has the pluck to pull that off.

  4. Again, thank you for sharing and teaching and joking and for being 'you'

  5. The image of a muscular symphony is singularly captivating. My neuroscientist's brain completely understands the mechanism, but I imagine the experience is unlike anything so mundane.

  6. Steve-you might be the bravest soul I know. And Donna...such a partnership you two have. I am so fortunate and honored to be a part of your friends’ circle. My heart is aching for you both.





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