OUCH!!!!!!!!!!!!!!!!!!!!!!!!!! Every morning I wake up and my left shoulder blazes, my left arm is bent and won't straighten, my fingers are bent and my wrist won't rotate. Every morning I use my right to fling my left onto my chest, all the while forcing the joints to move. Essentially, I bring my arm from it's rigor as a start to each day before I slowly lower my feet to the floor, propping my body with my weakened yet still functional right; even more slowly, I lean forward and backward, increasing in speed and arc until I feel I can cross the line of balance which will put my weight directly over my feet so as to be able to push straight up and rise from the bed. Once standing, I stiffen all my muscles in an immobile stretch and literally quake and vibrate, sometimes involuntarily bouncing my right leg in a spasmodic "thumper" like dance. I then venture a 3' walk to the dresser and hang on until my bearings slip into place. From here, things get interesting. While stumbling through my morning ritual, I have wasted valuable time and have revved up my urgent need to get to the bathroom. Accelerated, whacked out motor neuron activity must permeate all of my physiology because the need to pee comes on like a freight train. I grab for the bedroom door, as much for purchase and balance as for exiting, swing it wide and right arm monkey swinging myself from door frame to door frame to bathroom to toilet, always barely in time, always in a panic, always massively relieved when successful.
Mornings are always tough, having spent the night a restless corpse in waiting, flopping and repositioning myself constantly to relieve the stiffening of my arm, always waking to find it a dying branch attached to my aching shoulder. Once up and around, my waking movement gives me some relief. I resist taking any pain medicine for the nights for fear of sleeping through signals prompting me to move to stave off the stiffening of my joints enough to delay my paralysis. I prefer to resist the pain meds, the anti depressants, anything that might mask the problem, not helping me at all. I need to be aware of everything going on with me.
A strange sensation has developed, connected to a phenomenon involving muscle activity I never would have been aware of had I not contracted ALS. I guess I picked up this disease to further my education. I sure wish I'd skipped the class. The deal is this: I cannot maintain purchase. What I mean by this is that I can't dig in and hang on. My feet slip off of everything. A bar stool . A footstool. Each other. I can't keep my arms crossed, they slip apart. I guess that my muscle memory has been compromised and that my hands and feet acquire muscle amnesia and just plain forget to do their jobs. Another weirdness is the difference in the sensation of my left and right hands. If I run my right hand down my left arm my skin feels normal under my palm, but if I reverse, using my left hand, the feel is totally different. Rougher. Coarse. Almost scaly. I guess this sensation must be my first encounter with motor neuron death. Scary.
On a good day, I can get out of my chair in the living room on the first try. On a good day I can swallow my warm coconut oil without gagging. On a good day I can navigate my way to the kitchen without my power wheel chair. On a good day I enjoy the fact that I am loved. On a bad day........... forget that thought.
Hi, I ended here by accident while searched for something else. But since I see you have ALS, you may want to get an appointment with Dr. Dashima Dovchin in Farmers Branch, Texas. She has had good success in helping ALS patients. She did it for a study in pain management at a hospital. She practices acupuncture and will work with your MD or DO.
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