Sharing the lessons along the way…

Trusting the Elephants

Nerve Endings.jpg

Beautiful Nerve Endings (Photo credit: Steve Dorman)

Every cell in our body has its own little brain that includes a memory.  Perhaps not in the way we traditionally think of it, but memory of some sort nonetheless.  The cells in our muscles, in particular, have memories like elephants.

I believe it is mostly this muscle memory that allows me to continue to walk with the cane in spite of the clonus.  The repeated shaking of the muscles in my legs when I extend them from a seated position are not that obvious when I am walking along with my cane.  Unless my legs are overly fatigued, I hardly notice it when I am walking around the safety of my own place.

Because of this memory and the other complicated pathways in the brain associated with it, I have gone from not being able to propel myself forward to being able to—even as the baclofen was continually being reduced in the pump.

I never stopped trying to make my left foot propel me forward.  I did targeted exercises that used the strength and action of my right foot to strengthen and remind the left foot.  This not only activated the muscle memory in my left foot and ankle, but also activated a pathway in the brain.

I continued to ride the stationary bike even though pressing that left pedal was not really happening in the early weeks of the decreases.  The last few times I rode the bike, that left foot was doing almost as much of the work as my right on those pedals.

In spite of the number of freak out moments I have had throughout the process to get this pump removed, I never lost sight of what I knew was physiologically possible.  Since it hasn’t been long at all that my legs were running 5K’s and walking my dogs, the muscles remember.

At this point, my muscles are doing what they remember they are supposed to do. Because I have a motor neuron disease, the messages get scrambled from the brain to the voluntary muscles.

This makes keeping the muscles active and reminding them daily of what they know they can do important.  It sort of bypasses the signals from the brain and can make me more mobile for longer.

My goal is to not allow the muscle memory to fade.  That was the foundation of the plan I set in motion before the doctor decreased my intrathecal baclofen at the beginning of this process.  The stretches, the exercises, the biking, the pool, the supplements, keeping my schedule normal, and everything I have shared with you were all part of the plan because of the science behind them.

Yesterday afternoon, the burning torso returned.  I can’t say I wasn’t disappointed, but I didn’t stay there.  I had a lengthy discussion with myself about the importance of trusting my body’s healing ability.  I have to believe in the process I trusted when I made the decision to remove the pump.

Two days without the burning torso at a time is better than no days without it.


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