Robin used eyegaze access on an Accent device with Essence software to tell his SLP Assistant, Jan, this story, the week before he passed away.
“When I first got ALS I could still speak. I had had problems for a while but did not know what it was. My speech, balance as well as my left hand having no muscle were the first things I noticed. By 2019, my voice was different. I was generally getting weaker. I was diagnosed with ALS in October 2019 and it was confirmed in December of the same year.
NRGH speech department was quick to suggest CAYA and I got seen within just a couple of weeks. I got an iPad which helped me till I could not use my hands. I was able to work and when I was not understood, use the iPad. I also used “WhatsApp” to stay in touch with others.
I really liked having the iPad when my speech was not reliable, and I did not know if it would be okay. When the iPad was not useful because of my hand function, CAYA brought me another system, the Accent with an eyegaze module.
At first, the device was not very helpful because it relied on laypeople (family) to set it up on a table and the positioning was not always the same. My family had lots of changes to deal with and this was one more thing and did not get done as often as I wanted. After GF Strong helped the CAYA team with the mount set up virtually, it was an integral part of my sanity. Availability and correct positioning made all the difference.
This device allowed me to give directions as to how and when I wanted things. With the device, I was able to talk to family independent of an interpreter. I had sufficient language to make my thoughts known to participate in the MAiD program. Perhaps most important to me, I had my snappy comebacks programmed in to deliver and demonstrate my personality. This took me through a brief stay at the hospital and on to hospice.
I am ending my story in a hospice facility that was not close to my home and family could not visit daily. I am able to successfully get to know the staff there because of my eye gaze system. We share stories about family and history.”
The staff at Trillium Respite confirmed that they truly felt they understood who Robin was because of his eyegaze system and his ability to navigate it.
Robin accessed MAiD services on December 3, 2020, and was using his communication system until that day.