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.