It was ever so slight. I woke up in the middle of the night, wanting to turn over, and was instantly reminded that I can’t. Then the thoughts started: when is the time going to come when I can’t move at all, and I can’t nudge or call for Cliff? Fortunately, I can move enough to turn on the light, somewhat adjust my pillow, and pull myself up on one elbow. I just can’t move my legs or hips. It has been several weeks since I last experienced that near panic feeling; so when it happened last night, I turned on the light, reached for my iPad, read for all of five minutes, and went back to sleep. During that brief encounter with “near panic”, I thought, I am going to make sure when I get to that stage, I have lots of drugs.
I have never been much of a drug (legal or illegal) taker, but I see it in my future, hopefully many years from now.
One of my newest, very best ALS friends, Shelly, mentioned on Facebook this week that she has begun voice banking using Model Talker. Model Talker is a software tool for people who have lost or are losing their ability to speak. According to their published information, it allows people with ALS or other conditions to use a synthetic version of their own voice for communication or to choose a voice that best suits them.
The sad thing is, with ALS, we don’t know where our bodies will be hit next: legs, hands, arms, breathing, swallowing, or speaking. So I have already informed my grandsons I will be “banking” my voice so they will never be without my micromanaging which I often get accused.
Although I haven’t checked it out yet, my understanding is that you record 1600 sentences in your own voice so you can use a computer-generated voice.
I wonder if it picks up the whiny and bossy tones in a person’s voice. I would hate for any of those three grandsons of mine not to get the same gentle, micromanaging nuances I have worked so hard to perfect over the years from my computer-generated voice.
Isn’t it a strange new world? Managing/nagging by remote control: “Hey, could you move that plant a little further to the left…and the leaves…what about the snail bait…” and on and on it goes.
–Susan