We are thankful to have a guest author, Elizabeth Stricker, for this blog post!
A typical day with eye gaze involves flexibility and mixing up communication methods. While it can be hard to get a good eye gaze calibration in some situations — in bright sunlight, or on the go — I always use it if possible. I want my PALS (person with ALS) to be able to talk as much as he wants, and his eye gaze device enables his communication abilities like nothing else.
Here are some ways we set it up throughout the day.
MEETING THE DAY
Once he is ready for the day, most days start with sitting up in bed so that he can save his energy. I roll our floor stand under the bed and position the eye gaze in front of him.
I refine the position from the calibration screen in the HIRU app, and we adjust until the camera reads his eye movements accurately.
Sometimes, this takes troubleshooting:
- Cleaning his glasses
- Adjusting light to remove reflections
- Eye drops
Once he’s set up, he can do anything you would on a computer, like:
- Reading
- Taking courses
- Emails and text messages
- Writing
- Social media
CHATTING WITH A VISITOR
Later, a friend stops by. We have pre-written phrases ready to go in his AAC app (we use Fast Talker in Grid for iPad).
Some of his favorites:
- Nice to see you
- How have you been?
- Thanks for visiting
- What’s new?
To say more, he types out responses and questions. Predictive text makes this a lot easier.
RESTING WITH OPTIONS
If his eyes are getting tired, I can angle the floor stand beside the bed. This lets him see the TV and be able to talk or control the TV by turning his head to the side.
This came in handy in keeping up with March Madness games, since he could also watch games on his device.
UP AND ABOUT
He gets up to his wheelchair to greet the kids when they get home from school. I set up his eye gaze with our wheelchair mount.
Here are a few phrases he uses:
- Who was nice to you at school today?
- What did you do today?
- Do you guys want to play outside?
- I’m so proud of you.
He uses his device to play with the kids — he is always the robot ninja in their games, and has lots of play phrases:
- The skeletons are coming!
- Use your powers!
- Get them with your fire sword!
- You got them!
- Save me!
BEDTIME
After dinner, I set him up in bed again. The kids love to sit with him and hijack his device. They are learning Spanish together and use educational play apps. At bedtime, he uses it to say a prayer and goodnight.
Elizabeth Stricker BSN, RN Elizabeth spent 14 years as a nurse, supporting and educating countless patients. Today, she is the full-time caregiver of her husband, who is living with amyotrophic lateral sclerosis (ALS). When he lost his ability to use his hands and speak, eye gaze technology helped him reconnect with the world. Elizabeth draws on her experience in patient education, her love of writing, and the lessons she and her PALS have learned together to create resources that support others on similar journeys.
