Fears / Happenings

From Dragon to Tobii

Early in the morning, my speech isn’t too garbled. Dragon 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.

Love, Patty

8 thoughts on “From Dragon to Tobii

  1. I hate when I cry, all the saliva and mucous runs down my throat (even though I use suction). I get short of breath and cough a lot, do you?

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  2. Hi Patty. I know Tobii is frustrating; I told my wife that I probably would have kicked my Tobii across the room if I was able to when I first began using it. But it really does get easier over time. I do have to close the curtains and dim the lights in order to eliminate the glare. It isn’t just Tobii, all eye-tracking computers are like that (I’ve used four different systems).
    Are you making sure that your eyes are centered in the calibration box before you calibrate?

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    • Thank you so much, Bill. Glad to know it will get better. Yes, we do check the calibration most of the time. I guess it’s a good thing we are unable to kick our Tobiis across the room. :-)

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      • Patty, I forgot to mention this – the reflection from your glasses might not be from the lenses, might be the frames. This was the case with my glasses; I ended up getting some not so fashionable computer glasses with black plastic frames and low glare lenses.

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  3. Good afternoon, dear one little, very determined sister of mine. We must share the same ‘can do it if I just keep trying’ gene. From mother, there is not doubt for me. I want so much to be of help to you, too. Your writing today had me in tears too. At this age, it kinda does too inhibit something in the physical make up when seriously feeling the stress that is upon us……however, there is a spark to just be ourselves at all times, no matter what happens, we will understand some how….we are just wired that way. Hopefully you will find the trick to the ‘glare’ asap. I will call mother in a while. If she is not already with you today. Did you vote, too??????? I did. All Dem’s this time….I have to admit that I do admire Kevin Flalkner, Mayor of DAGO. I like the action and the working together of public servants to help all the people at all times. Lov u vivi

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  4. I do feel your discouragement when things get more difficult but you jut can’t give up. I
    find those days often. But of curse I am grateful that my fingers work well on my computer keyboard. I, too, would love to help you, but know you want your writing to
    be “you” I pray that you will find the answer in getting Tobii to work for you. Now I will
    try to get some election results. I am late getting back to you. Love and prayers.

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  5. Oh, Patty! Your courage is so amazing! Thank you so much for continuing to blog. Your words humble me every time and, once again, I am grounded.

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