Tuesday, July 2, 2013

Living with ALS


 I enjoy Peter King's NFL columns in Sports Illustrated and on si.com. Over the summer, he's having several guest writers, one of which was Steve Gleason, a former New Orleans Saint who has been battling ALS for over 2 years. His guest column is funny, tragic, introspective, and above all, a fascinating look at how to live life when you can only move your eyes.
A sample:
So, how does this technology work? 
I have a tablet PC attached to my power wheelchair. This tablet, my command center, sits about 18 inches from my face. At the base of my tablet, I have a black bar that houses infrared cameras that track my pupils. From there, I have a toolbar on the right side of my tablet screen that has mouse commands: left click, right click, double click, etc. So, I look at my on-screen commands for half a second, and those commands select. Then I look wherever I want to click on screen. For example, if I want to minimize my Spotify application, I look at the "left click" command, then gaze at the app's minimize button. If I want to read today's MMQB column, I select the scroll button from my on-screen commands, then gaze at an area in the column. The technology senses where my eyes are as I read, and automatically scrolls down the page accordingly.
Sweet, right?!
It works the same way with my keyboard. This is how I speak: I type whatever nonsense comes to mind, click "speak," and a synthetic voice that sounds hauntingly like my old voice belts out the nonsense for all to hear.
I can crank out about 20 words per minute. For 4,500 words, that's almost four hours to finish this column.

He references The Diving Bell and The Butterfly, a terrific movie about a man with locked-in syndrome:

1 comment:

  1. Cam
    Have a great July 4th weekend. I am taking a vacation day tomorrow to pick up Nat @ airport then going out for lunch. Larry D. & I have not seen her since April. We are quite excited. She will be home again in mid Aug. We take her back to Columbus on Sunday.
    Larry D. received fantastic news about his abdominal wall tumor - NO cancer. Tumor was 10"L x 4"W x 5" thick. We have been quite scared past few months. He didn't sleep much for the week before his surgery worrying. He doesn't worry but was pretty scared. His nasal polyps are inflamed & growing again. That will more than likely be a surgery beginning of next year. He is still able to work 56 hours each & every week. Sure glad he is a strong man. Don't know how I would function not having him here. As I have said before who would mow the yard & change the light bulbs. We always joke about this as I hate outside work. These hands cannot get dirty. I would mow if I had to do it.
    I told Dale Reeder that Larry D. & I want to make a MI trip before the snow starts to fly this fall. Dale & Larry really got along well last year when they met the 1st time at a show. Guns were their main topic of discussion. Larry had already met Joe Kelly the previous year & of course knows your family. I am happy that he has met some of my most special friends since he has heard about B-Y for several years.
    Nat continues to love night shift.

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