Because she was respiratory onset, Mary did not lose the ability to speak early in her ALS journey, like those with bulbar onset do. She had decided to do “voice-banking”, using a program to record her own voice so that it could later be programmed into a speech generation device. She got all the equipment and software she needed….then didn’t record a single word. I think because she had had such an amazing voice, had been such an amazing singer, she wasn’t happy with how she sounded. I don’t think she understood that it was just going to get worse. Or how much it would have meant to have her voice recorded.
Ten months after diagnosis, her hands were nearly non-functional. I started a fundraiser to purchase an eye-gaze communication device for her. At the time, Medicaid/Medicare would only cover a locked device, which meant she would not be able to use it for any internet access. Since that was how she communicated with people, most of whom lived at least three hours away, we decided not to use Medicaid. She got a grant from ALS Guardian Angels, friends and family donated money, and I paid for the rest of it out of pocket: a Tobii EyeMobile and a Windows 8 tablet with Dynavox software. The Adaptive Communication Specialist came out to the house to calibrate it to Mary’s vision. We couldn’t quite get it right, we thought because of her glasses, or the lighting in the house, but we were sure with practice she would be able to get it down. She was also only the second person in the area to have the new EyeMobile, and they were still working out the bugs. I was nearly in tears, with joy, that she would be able to be online again, to text her friends, that she would have a way to communicate when her weakening voice was gone. But she didn’t practice. It sat in the box. The ALS Association loaned her a more traditional Tobii I-15 and we tried to calibrate that to her eyes. It worked a little better, but it still sat in the corner. I’m not entirely sure why.
When she could no longer speak because of the trach, I took the Tobii to the hospital. We couldn’t get it to recognize her eye gaze. The hospital Speech and Language Pathologist tried to get it working. I demanded they bring the Adaptive Communication Specialist in from another one of their hospitals to work with her, which they did for a couple of weeks, and then “budget cuts” got in the way. We snuck the Adaptive Communication Specialist into the hospital as a “visitor” to try to make adjustments. We would get it working, then a nurse or CNA would move the stand, and then it wouldn’t recognize her eye gaze again. We finally figured out that she was having fasciculations in her eye muscles, so that her eye gaze did not hold long enough for the machine to recognize it.
People think that ALS won’t affect the eye muscles. They say that about a lot of muscles. The thing is that yes, ALS affects the voluntary muscles. But every muscle that you can learn to control can be affected. You can learn to hold your breath; breathing is affected. You can learn to hold your bladder and bowels; your sphincters are affected. You can learn to direct your eye gaze and focus your vision to different distances; your eye muscles are affected.
When you can’t type, or write, or speak, when you can’t move your hands or fingers, when the one tool you thought you would be able to use to communicate is taken away, how do you express your needs? Your fears? Pain? How do you call a nurse? How do you share what you are thinking or feeling? How do you tell someone that you love them?