Yesterday I finally got my eye gaze back! I have had high anxiety trying to get everything sorted out the way I like it. Then today David spent at least 12 hours renaming my voice files one by one. 1200 files he would play then edit the name and save. He was so Patient and this is not his idea of fun. I’m so grateful for his help. Since I use this 100% of the time to communicate, control devices in my home, surf the web, email, texting and writing my book.
I really did get lucky.
On August 2nd, I stopped my ALS medication after talking to my doctor of course. I have been on Tiglutik aka riluzole since my diagnosis in October 2019, I wondered how I would feel without it since I don’t know any difference.
Studies show that it slows progression by 3months and I have benefited from it the past three years. I’m always taking a risk, I agree.
Tomorrow; today, we’re going to church, I can not wait. Eventually the eye gaze will come to, so I can talk and maybe be able to share my testimony with the church. That would be amazing!
Well, I need to be suctioned and go to sleep.
