At bedtime Mark carefully picks me up from my wheelchair and gently lays me into our bed. We’ve been sleeping in our bed again not because it’s more comfortable than the couch but because I want to be closer to Mark. Night time can be really scary or lonely with not being able to talk or move. Once in bed Mark rolls me to my side putting one pillow against my back to help support me and one between my legs to better align my hips and legs. He makes sure my hair is out of my face as he adjusts my head pillow and puts my bite splint in my mouth. I’m starting to get hot spots on my heels which could easily turn into bed sores so Mark wraps my heels in a soft material like lambs wool.
I usually fall asleep right away and sleep for three to four hours before I wake up and need to be moved. Before I wake up tired Mark I contemplate whether I can go back to sleep or not. I try to adjust my shoulders by myself but they won’t budge. My legs are the only things I can move to help me get comfortable but they are starting to feel like really heavy limbs. Last night when I woke up my left ear was burning because it was bent over while I was sleeping so I wanted Mark to rub it. I tried to explain for about five minutes before Mark understood what I was trying to say. When he finally guessed my ear he thought I said no and kept naming more body parts until we came back to my ear again.
I want you to understand that I am one of the lucky ones dealing with ALS because I still have a voice. Some ALS patients lose their voice early on and don’t have a Tobii to speak for them or have a companion to sleep next to them. Mark and I have had two years to communicate with each other and work out the bugs so that I am always made comfortable. Some people never get this time.
I am truly one of the lucky ones.