n. 1.The apparently black circular opening in the center of the iris of the eye, through which light passes to the retina. 2.A student under the…
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n. 1.The apparently black circular opening in the center of the iris of the eye, through which light passes to the retina. 2.A student under the direct supervision of a teacher or professor. Paralyzed from the nose down,
By
Forgive
"It is not for me to judge," he wrote on his computer. "But there are a lot of people who need someone to remind them what a gift life is."
That someone could be Miller, 46, who recently earned an online degree from
It took him 2 1/2 years to complete the 50 credits needed for his associate degree of science in liberal arts.
He worked at it seven or eight hours a day, listening to podcasts, reading online texts, and watching video lectures and PowerPoint presentations.
And here's the kicker:
He did all that even though he is paralyzed from the nose down.
Miller has amyotrophic lateral sclerosis, often referred to as
He can't talk. He can't move his head. He can't breathe on his own - a ventilator does that for him.
But he can move his eyes.
And he can think.
He used a computer with special eye-gaze technology in his room at
Officials at Excelsior were so impressed that the president and several trustees flew to
His GPA: 3.8.
"I feel a great sense of accomplishment," Miller said via his computer. "Very empowering to finish what I wasn't sure was possible and do it so well."
Miller was working at a Ford car sales business in
The idea of college came to him after he received eye-gaze technology three years ago. Friends he had met online through a fishing website had raised
"I was bored with not doing anything to improve myself and needed the challenge," he wrote.
He sent out emails to colleges and asked for grants and scholarship funding, since most of his disability payments go toward his care.
From his bedside at
He provided some answers through email over a few days. Other questions he answered in person from his bedside over a two-hour period that he finally brought to a close with two words:
"Eyes tired."
When were you diagnosed?
I was diagnosed finally around November of 2000. The prognosis is always a death sentence. My doctor gave me 2 years and said I should go home and "get my affairs in order." I beat the odds because I am young for the normal age range, was in relatively good health at the time, and I have taken advantage of all the available medical technology to keep me alive.
In 2005 I went into respiratory arrest and had to be resuscitated. If I had not chosen to have a tracheostomy and use a vent, my life would have been ended in a few hours max. Many do not choose that route out of concern of being a burden or having no quality of life. Technology isn't the answer for everyone and most doctors don't paint a pretty picture of life on a vent.
What was the progression of your paralysis?
My progression was limb onset that started as a muscle twitch in my right thigh. By the time I retired in 2003 I could not stand or raise my hands above my shoulders. It affected my legs first, arms second and my torso last.
Why did you start using eye-gaze technology?
This is kind of a last resort for people with ALS as a way to communicate. Before eye gaze I used a computer with something called a head mouse. It had a small reflective sticker you put on your glasses and a camera would track that reflection to move the pointer. To click there was a selection window that allowed you to pick whether you wanted to right click or left click.
Then I lost head movement.
How does the eye-gaze technology work?
Eye tracking computers work by illuminating the users eyes with infrared light and converting the reflection of that light to determine where you are looking. If you have ever seen red eye in a photograph or the eyes of an animal in your cars headlights at night, that is the reflection that eye gaze systems use. There is a simple calibration process that allows the tracking software to know exactly where you are looking.
How do you click on something?
The 3 options for clicking are: Blink to click. This is self- explanatory. The user just looks at what they want to select and blink. Dwell time: This method only requires the user to stare at the intended target for a predetermined time and the software clicks for you. The amount of time can be adjusted to the users skill. Switches: In some cases the user may have enough motor skills to hit a button. There are hundreds of adaptable switches that can be used for a person's unique physical requirements.
So how do you personally click on a letter: Do you blink or do you dwell your gaze on the letter?
I use a dwell time of 400 milliseconds. Blinking on every letter would be exhausting.
What are the things you have most struggled with since having ALS?
Independence and privacy were big losses for me. My home now is this rowom. I have to share it with a stranger/roommate of the hospitals choosing and up to 36 different combinations of nurses, nursing aids and respiratory therapists. Keeping any consistency of care is challenging when staff turnover is high. Living with autonomy in the system on
What do you miss most?
My passion was fishing. It was also my stress release. Being outside on the water in some secluded creek or cove away from the rat race of life always gave me peace. I also miss the intimate touch of my loved ones.
What's next for you?
Only the beginning. I am going back after a break. I am researching programs for a possible bachelor's next.
Do you worry about whether you will lose the ability to use the eye-gaze technology?
We really don't know what we will lose next, or how long it will take. I am always trying to stay ahead of the disease progression. There is research going on with systems that read electrical currents in your brain to trigger a computer for communication. That is in the future, but I am hopeful I won't have to find out.
What has helped you through the most difficult times?
I think my ability to adapt and having a great deal of patience has been invaluable. It is still a hard life. I have to pick my battles as some things can't be changed. The quote by
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