MdDS chronicling invisible neurological balance disorder
MdDS a chronicle of an invisible neurological balance disorder
Empathy & raising awareness
Pease no pity
Try living with & attempting to
Walk with severely altered balance,
Sensations of constant rocking, bobbing, swaying, tumbling,
Disequilibrium, & unsteadiness,
as if walking on a suspension bridge, water bed, trampoline
a stormy ship in high seas.
Moving floor sensation earthquake beneath ones feet
severe & noticeable while walking, standing, sitting.
Associated considerable fatigue.
Require support for walking, standing, holding on to walls.
Clumsily handling objects – dropping things
G forces gravitational pulling downwardly at my bodily being
Brain fog lingering
Unceasing internal movement sensations as I read
My new normal
Thus began my eight year journey with MdDS
Neurological testing, CAT scanning, ENT & VNG testing
Ruling - rare disease finding
Less than 20,000 victims world wide
Car driving untenable
Currently 78 years of age
Eight years with an invisible neurological balance disorder complicating my life.
Pain & imbalance
Accompanying my ever movement.
Walker, wheelchair, impoverished movement
All constant, unrelenting & goading companions.
Yet I find joy in my most important realities,
My children, grandchildren, great grandchildren, family, journaling,
my memoir sharing group, audio-book reading, computing, viewing
Photo scanning for my family’s visual memoir,
I pursue multitudes of other delightful endeavors.
You see I press on
with this inwardly twisted tangled body trailing relentlessly on.
This is the path I am on
This is the road I must travel to get to the place I must go.
Life is still precious
Even when partnered with unwelcomed companions.
This Is Me - This Is My Life
This is the road I choose to travel to arrive
at the place where I must go.