It’s been almost two years since the onset of symptoms, eighteen months since the ALS diagnosis. It continues to progress.   Wheelchair bound, fed and bathed by Antoinette.  Will it ever slow down, Stabilize, stop?  One day for sure, at the end!

At one of my favorite outings recently, Tallulah’s horse Riding  lessons.   Antoinette and I were sitting under the trees in the evening breeze watching Tallulah put Ruby through her paces While catching up.

A: ‘Life has changed so much during the last twelve months, what do you miss most darling?’

I:  hmmm.… So much!   It’s difficult to mention a few.

After a few moments I was overcome by emotion and we could not continue our discussion, so I decided to put it into the blog.
The question made me take note of what I have been loosing day by day over the past two years. With the nature of the disease the loss is gradual and relentless. Because it is not rapid, as it would be in an accident, your brain starts to adapt to small changes – Slowly, always evolving to maintain movement.  A cane, a walker rollator,  an alternate vocabulary, always ‘evolving’ to attempt to remain independent!  But before you realize you have lost the ability of MOVEMENT, and with that so much more. I recently came across a quotation from neuroscientist Daniel Wolpert:
“We have a brain for one reason and one reason only — that’s to produce adaptable and complex movements. Movement is the only way we have affecting the world around us… I believe that to understand movement is to understand the whole brain. And therefore it’s important to remember when you are studying memory, cognition, sensory processing, they’re there for a reason, and that reason is action.”

I realized that with the loss of muscle and the ability to perform movement, no matter how complex or simple,  we loose brain efficiency.  I am sure muscle memory retains the process required, but without the brain to initiate what use is the process? Take a simple movement, a kiss!  It takes 34 facial muscle and 112 postural muscles to perform a simple kiss.  That simple movement triggers the release of hormones and neurotransmitters that trigger emotions, increases the heart rate, dilates the blood vessels and increase the intake of oxygen to the body, Euphoria  –  the power of movement, the dominance of movement in our brain!   I guess by now you’re asking “well, can you still pucker ?”   NO!  So many actions activate a sensory or cognitive response.  My early morning runs, the heart rate pounding, the increase in oxygen, the first rays of the dawn and  the comforting rhythm of my feet pounding the road.  The brain clears from the veil of sleep and the smells of the morning fill my nose.   The brain able to dissect each smell,  again, movement is required to initiate the process.  In this instance the movement of the diaphragm, triggering the lungs, activating the senses…..  THE MAGIC OF MOVEMENT!

The renowned Neurologist Oliver Sacks said ” Much more of the brain is devoted to movement than to language. Language is only a little thing sitting on top of this huge ocean of movement. ” We never give this a thought.   It takes more than 100 muscle to be able to talk properly.  It only becomes apparent when we start to loose the ability to pronounce words, project our voice and conjure up facial expression.  The same applies to languages unspoken, –  body language, written,  sign and the language of the arts. I’ve heard it said that our feet are magical, so small and yet able to support our bodies.   And dance, the celebration of the magic!   The reality is for billions of years movement has been evolving, perhaps even before the consciousness of mankind.  Is this what neurologists are fighting against in finding a cure for neuro-degenerative disease, the continuous evolution of ” the huge ocean of movement” in our brains.

The ability of the brain or our consciousness to adapt to the continued onslaught of the symptoms is amazing.   We are able to face adversity and adapt,  the biggest question is how long?  How long can one survive without the magic of movement, how efficient can the brain remain and how does that effect quality of life?  We know with ALS patients that all other cognative and sensory abilities remain in tact,  but how efficient are they without movement?  We know that the brain is powerful.  As I now start to rely on the movement of others to trigger my sensory functions, it’s more evident, movement brought us into this  world and creates the experiences that we build our legacy and our memories on and the lack of movement will eventually take me from this world – as it will with all of us in some way.  Energy from the universe, Energy back to the universe.

I guess by now it’s obvious what we miss and how extensive a list could be! So we’ll spare a longer read and list a few examples. The ability to, whisper I love you, to give a hug, to dress myself, to go for a long run, to roll around with the dogs, to have an argument with Antoinette, to explain math or science to Tallulah. The ability to scuba dive, to draw a sketch to explain my thoughts, to do up the clasp on Antoinette’s evening dress, to tighten a clasp on a piece of jewelry and the ability to shower and shave myself.

One thing is certain, as the list grows longer we will continue to focus on maintaining an efficient and effective brain.   Dealing with changes as they occur, creating experiences through movement of others and making memories to enrich our lives

#ChallengeALSDXB

 

 

 

 

 

 

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