I have 8 Alexas spread throughout the house and I am able to call for help or tell Ashton to come hang with dad. Technology is truly amazing, I can’t imagine how difficult it must have been for disabled folks before technology. From my bed using my eye gaze pc i am able to control my tv, my adjustable bed, my window shades, my lights and my ceiling fan speed. I never bothered with converting our ac thermostat because I figured that would be a constant struggle between my parents and I haha. A well known human with ALS Steve Gleason said, until there is a cure technology can be the cure. He is right.
Anyways, one of my favorite times of day is bedtime. Sitting in my power chair all day can become uncomfortable, and lack of mobility makes it difficult to pass gas. When I get transferred to bed in the hoyer I always let one rip, my caregivers love it and we always laugh. Once I’m situated comfortably she will start the massage on my feet and legs. This is the time I will call Ashton via alexa to come hang out. We will either watch tv, YouTube videos, read something on the Internet or just talk. Tonight we read some of my writing, and I suggested he write an entry. He said heck yeah, so stay tuned for that.
Moments like these are what fuel me to keep fighting.
Around 9:30 he goes back to his room to watch his own tv before his 10:00 pm bedtime. My caregiver and I sometimes chat, sometimes watch tv together or just enjoy comfortable silence. She will stay with me making sure I’m comfortable and my lungs are clear of mucus. It’s beginning to get cold, so I have switched to my electric blanket. I love the cold air and a warm blanket! At 11pm she leaves, I turn on a funny movie or documentary on the tv. I always have the tv on when I sleep, white noise i think they call it. Mom will come in and kiss my forehead wishing me good night.
Life is difficult for everyone, including myself. Difficult, but not impossible. The juice is worth the squeeze. Don’t give up, find your love for life. I have.