May, 2020
ALS has been described as being stuck in the middle seat on a never ending flight. You are unable to move or speak, and God help you if you need to use the bathroom.
The current loss de jeur to the bulbar region motor neurons means I can’t talk.
This no talking thing really has me embracing the suck. Anything I say sounds like dusty air through a rusty pipe organ. I do enjoy listening to people talk, however, and before the great sheltering I was fascinated about how much you can learn about someone. If they stopped talking long enough to hear what they were saying, they would soon realize they have told you more than they would want you to know. Present company excluded, of course.
Notwithstanding, I still want to join the conversation. This is no small feat when I can’t be understood. When I try to point out the beautiful blooming poppies my caregiver asks me if I need to pee. Thank goodness I can still shake my head. Although frustrated at first by this seemingly insignificant detail of being understood, I learned to laugh at the confusion to keep myself from going bat shit crazy.
Luckily I was able to participate in a telemedicine study sponsored by the ALS Association concerning speech assistance devices. Through the study I was introduced to eye tracking. This technology allows you to get out of that airplane seat described above, at least virtually. Eye tracking allows you to create words and perform other computer-related functions using your eyes. It is a connection to, and with, the world for pALS no longer able to speak. It is our eyes of the world.
You now have the ability to toss commands, compliments, and all manner of other verbage at your world without receiving that wonderful “what the heck are you saying” look. You’ll use it so much that everyone will wish you had not received the eye tracking device in the first place. On balance, tho, It is making life easier for my caregivers as they no longer have to guess whether I want chocolate, vanilla, or something in between in my post lunch shake.
The technology isn’t all puppies and rainbows, however, and the learning curve is steeper than an icy mountainside trail on bald tires. More on that in my next segment.
Embrace The Suck 
Omg I love hearing these upbeat words of yours! With the world falling apart, u r an anchor for us to hold on to! I wish u all the best and hope we find a way to reverse this illness soon!
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Thanks, Bob. It was so great to be able to communicate with you via your device. For example, you told us about your Grateful Dead tie that you were going to wear for the wedding!
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Wow. I’m totally impressed! For the last 30+ years I have been laboring over verbiage produced the old fashioned way (that is, on a computer keyboard), and my prose is not nearly as eloquent or vivid as yours. You have more talent in your eyes than I have in my entire body. Have you thought of teaching an on-line writing course? Sign me up! I’m already saving your posts as examples of compelling writing. Thanks so much for sharing your wit and your wisdom, on so many levels!
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So impressed with all of your posts, Bob! What an education you are providing for all of us, your fans! I’ve always been impressed with Stanford. Started taking Continuing Education classes there in 1988. Stanford says 34 (I think!) so far! Hang in there, and keep on keeping on informing us! We’re with you!
Kay Keeshen (friend of your mother in law, Jan)
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Thank you Bob for your candor and for the education that you are providing us. I am glad that I am finally “meeting” you and getting to know you through your journey. You have a wonderful personality and are extremely talented. I admire you. Sincerely, Debra Figone
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I can’t imagine writing with my eyes. These blogs are so well-written and your voice and sense of humor come through. When you mentioned the bald tires on an icy mountain road I remembered when we all borrowed my parents’ Econoline van to go skiing(??? something in snow regions). I remember it so vividly because my parents wouldn’t let me drive. You had to be the designated driver because you were a guy. I was incensed, but had to agree if we wanted the van. I still think I was a better driver than you were. Thank you for this post and for the jog down memory lane — Lois
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Wit is my favorite quality in a person- must be why I like you so much!
I am also an appreciator of sarcasm- hence, my love for your sister!
Smooches to you and Laurel,
Carolina
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