Early in the morning, my speech isn’t too garbled. Dragon [Dragon NaturallySpeaking] does pretty well understanding me. So I am dictating this paragraph via Dragon. Later this morning I plan to continue writing using my eye-gaze device, Tobii.
As the day progresses, it becomes more and more difficult for me to articulate. Even now I am having to correct several times in each sentence.
Of course, Tobii is no picnic either. I am having trouble with light reflection off of my glasses. There is an indicator on the screen that lets me know where Tobii senses that I am looking. I see it bouncing back and forth as it tries valiantly to locate my eyes. My frustration levels with both methods of typing are about even right now.
We decided to postpone my visit with the gastroenterologist. I am still swallowing just fine. We rescheduled for August. If things are changing, we will discuss the feeding tube.
There is no question that my ALS is progressing. My speech, of course, is worse. And my right arm and hand are getting weaker. Driving my power chair is more difficult now. In particular, right turns are a challenge. I have a feeling it won’t be long before someone else will have to drive my chair for me.
On Tobii now … and as I have told others, this is like herding cats!
(The next day)
OK. That was not fun. I am back on Dragon this morning. Yesterday was very discouraging. We will have to figure out a way to minimize light reflection off my glasses. Without boring you with details, it is difficult to explain my frustrations. Suffice it to say that I abandoned blogging yesterday and kicked back with a movie. Later in the evening as I attempted to explain to Alan about my difficulties … well, let’s just say things got damp. I really hate it when I cry. It’s so hard to breathe. A good cry used to help once upon a time. Not anymore.
I have had a couple of offers from folks willing to type as I dictate. I appreciate the offer, but writing is really a solitary activity. What I write in this space is all me. If filtered through another, it would not be me. That being said, it’s possible I may have to accept this as a possible means of continuing this blog.
BUT… Not this day. Though I was defeated in this battle, I have not lost the war! Today is another day. In a few minutes, I plan to take another stab at Tobii.
At my lowest point yesterday, I felt like I was being silenced. It was as if I was turning into “receive only” mode, incapable of output. I could envision myself sitting here watching TV for the rest of my life. Unable even to change the channel. Bleak, huh?
Today is much better. I am ready to try again. I will let you know how it goes.
This blog was posted originally on June 3, 2014.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.