Thursday, 5 December 2013

Legs Akimbo

Well... It finally happened. I knew it was going to happen eventually, given the nature of my progression and the simple facts of ALS. The loss of muscle in ALS forces all kinds of changes in the way you do things. Nearly every ALS patient has had at least one or two, and possibly more, of these changes go sideways, sometimes quite literally. For me these changes had meant falling down, but that was pretty much while I was walking. I have fallen once while transferring to a bed, but it wasn't so much a fall as it was a slide off the edge and onto the floor.

This time it was different. This time my left leg fell out of bed; not the rest of me, just my left leg. My leg was still connected to my body at this time; the rest of me did it's job and held fast, so only my leg was dangling, bouncing off of the edge of the bed rail, wobbling free from blankets and sheets.

To understand how this can happen, you must first understand how I get into bed. These days this is not a simple procedure. First, I wheel my wheelchair parallel with my bed. Then I use the M-rail on my bed along with the right arm of my wheelchair to force myself vertical. Once my knees are locked, I transfer my left hand to the top of my dresser, along with my right hand, and completely force myself into a position that somewhat resembles standing up. Now that I am up, I rotate clockwise 90 degrees and sit down onto the bed.

All of this has worked reasonably well for me so far; the wheelchair gets in the way a bit so I have to manage that. After sitting, there on the edge of my bed I can wiggle my pants off and disrobe myself of shirt and socks. I sleep in my boxers, so at this point I lean backwards enough so that my center of gravity is far enough astern to prevent the dreaded bed-edge slide. Once well back, I use my arms to lift and swing my legs onto the bed.

This activity leaves me in bed, but at an angle. The nature of the lean puts my head further inboard than my legs, especially given that my leg flinging ability is limited so late in the evening, often impeded by that last glass or two of wine. Yet with all this I manage to move, wiggle and adjust the covers such that I can sleep.

Usually I start sleeping by rolling onto my right side. Heaven knows what I will do when I can no longer roll; it will most probably involve not sleeping on my side. As of now, I start on my right then during the night I typically roll from one side to the other a couple of times. Rolling involves rotating my upper body and using my arms to move my legs, or alternatively, I rotate far enough that my hips eventually force my feet to rotate along with me, and my legs make the trip with a sudden lurch.

That's when it happened last night. I was rolling from my right to my left. I stopped in the middle for a bit of a rest. Once rested, I rotated from my back to my left, allowing my hips to fling my legs. That's when my right leg suddenly released the pressure on my leg. The momentum from my now highly mobile left foot dragged my left leg past the edge of the bed and into dangling space. I had over-flung myself. Since I was at an angle to that bed edge, my right leg remained on-board and I simply felt the cool night air on my foot and lower left leg as it swung in the breeze.

So I had to fully wake up; my leg needed reloading. By this time I had to pee, since my body seems to feel that any waking moment is a moment for that function to take place. So I slid my right leg over, sat up, used the jug, then slid both the innocent and offending appendages back into bed. I adjusted and returned thus to slumber, adventure complete.


  1. It is a tough time getting into bed Richard. Will you soon need a helper?

  2. Not for a long while yet, Mom. I do just fine on my own. This story should be proof of that.

  3. Every day, a new challenge,eh Richard.I guess thats why we have to live life one day at a time.If we dont, some days it would just be too much to bear. Thinking of you.